Rede europeia de organizações de doentes

A Rede Europeia de Organizações de Doentes inclui todas as principais organizações de pessoas com doença respiratória da Europa. Estas organizações foram identificadas utilizando pesquisas na Internet e perguntando a peritos em todos os países europeus. Cada organização de doentes foi contactada através de um inquérito online para prestar informações sobre o seu trabalho.

Pesquise organizações de doentes, por país ou por doença, utilizando os filtros abaixo. A informação disponível está mais detalhada para as organizações de doentes que responderam ao inquérito. Tenha em consideração que nenhum destes sítios da internet foi revisto pelos nossos peritos.

Faz parte de uma organização de pessoas com doenças respiratórias a operar na Europa? Queira despender 5 minutos do seu tempo para nos contar sobre a sua organização, e adicioná-la-emos à nossa rede.

Redes encontradas.

A.M.O.R.onlus, Associazione Malati in Ossigeno-ventiloterapia e Riabilitazione, Italy
A.M.O.R.onlus, Associazione Malati in Ossigeno-ventiloterapia e Riabilitazione, Italy
Website:

http://www.associamor.com/

Coberturas:

Adult Asthma,copd,bronchiectasis,lung Cancer,tuberculosis,pulmonary Vascular Disease,interstitial Lung Disease,sleep Disordered Breathing,occupational Lung Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
ACSI - Amici Contro la Sarcoidosi Italia ONLUS
ACSI - Amici Contro la Sarcoidosi Italia ONLUS
Website:

http://www.sarcoidosi.org/

Coberturas:

Interstitial Lung Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Action for Pulmonary Fibrosis
Action for Pulmonary Fibrosis
Website:

http://www.actionpulmonaryfibrosis.org/

Coberturas:

Interstitial Lung Disease,rare And Orphan Lung Disease

Atividades:
Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Giving funding for research

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Providing information for patients
AEPNAA, Spain
AEPNAA, Spain
Website:

http://www.aepnaa.org

Coberturas:

Other Lung Diseases,adult Asthma

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Aha! Centre D'Allergie Suisse
Aha! Centre D'Allergie Suisse
Website:

http://www.aha.ch

Coberturas:

Acute Lower Respiratory Infections,adult Asthma,lung Disease In Children,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Providing information for patients

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating with patients via social media

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Alfa-1 Danmark
Alfa-1 Danmark
Website:

http://www.lunge.dk/alfa-1-danmark

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Meetings for and with patients
ALIANZA AIRE
ALIANZA AIRE
Website:

http://www.alianzaaire.es

Coberturas:

Acute Lower Respiratory Infections

Atividades:
Lobbying health departments or governments

Working with the media

Raising public awareness of respiratory diseases

Communicating with patients via social media
Alpha Europe Federation
Alpha Europe Federation
Website:

http://www.alphafederation.org/

Coberturas:

Other Lung Diseases

Atividades:
Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Lobbying health departments or governments

Supporting associations in European member states
Alpha One Foundation, Ireland
Alpha One Foundation, Ireland
Website:

http://www.alpha1.ie/

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Lobbying health departments or governments
Alpha-1 Foundation - USA
Alpha-1 Foundation - USA
Website:

http://www.alpha1.org/

Coberturas:

Copd,lung Cancer,lung Disease In Children,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Lobbying health departments or governments
Alpha-1 Nederland
Alpha-1 Nederland
Website:

http://www.alpha-1nederland.nl/

Coberturas:

Copd

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Lobbying health departments or governments

Raising public awareness of respiratory diseases

Recruiting patients for clinical trials

Helping patients communicate with other patients via forums and support groups
Alpha-1 plus ASBL, Belgium
Alpha-1 plus ASBL, Belgium
Website:

http://alpha1plus.be/

Coberturas:

Rare And Orphan Lung Disease,copd,other Lung Diseases

Atividades:
Lobbying health departments or governments

Working with the media

Raising public awareness of respiratory diseases

Communicating with patients via social media

Providing advice for patients

Providing information for patients
Alpha-1 UK Support Group
Alpha-1 UK Support Group
Website:

http://www.alpha1.org.uk/

Coberturas:

Adult Asthma,bronchiectasis,copd,rare And Orphan Lung Disease,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Alpha1 Deutschland e.V.
Alpha1 Deutschland e.V.
Website:

https://www.alpha1-deutschland.org/

Coberturas:

Other Lung Diseases,rare And Orphan Lung Disease

Atividades:
Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Recruiting patients for clinical trials

Helping patients communicate with other patients via forums and support groups

Offering a helpline service for patients

Providing advice for patients

Providing information for patients

Working with the media
Alpha1 Netzwerk e.V.
Alpha1 Netzwerk e.V.
Website:

http://www.alpha1-netzwerk.de/

Coberturas:

Other Lung Diseases,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
AMA Fuori dal Buio, Italy
AMA Fuori dal Buio, Italy
Website:

http://www.fuoridalbuio.it/

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Student internships and study guidance
ApneuVereniging Vlaanderen, Belgium
ApneuVereniging Vlaanderen, Belgium
Website:

http://www.ApneuVereniging.be

Coberturas:

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Asociación de Asmáticos de Madrid (ASMAMADRID)
Asociación de Asmáticos de Madrid (ASMAMADRID)
Website:

http://www.asmamadrid.org/

Coberturas:

Adult Asthma,childhood Asthma,lung Disease In Children

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Organising courses and workshops on asthma knowledge, use of inhalers, asthma springtime Preventing, Pediatric Asthma, adult asthma

In October 2012 organised by ASMAMADRID: 1st Course on asthma for health professionals, doctors, nurses in the SUMMA 112, (Servcio Emergency and medical emergencies Madrid) (academic accreditation by the Ministry of Health, Regional Ministry of Health the Madrid CAM)
Asociación de Familiares y Enfermos de Fibrosis Pulmonar Idiopatica (AFEFPI), Spain
Asociación de Familiares y Enfermos de Fibrosis Pulmonar Idiopatica (AFEFPI), Spain
Website:

http://www.afefpi.org/

Coberturas:

Interstitial Lung Disease,rare And Orphan Lung Disease,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Communicating research and health policy to the public

Lobbying health departments or governments
Asociacion Española de Afectados de Cáncer de Pulmón (AEACaP), Spain
Asociacion Española de Afectados de Cáncer de Pulmón (AEACaP), Spain
Website:

http://afectadoscancerdepulmon.com/

Coberturas:

Lung Cancer

Atividades:
Providing information for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Communicating research and health policy to the public

Working with the media

Informative courses, prevention-focused meetings, awareness campaigns, free psychological assistance, anti-smoking workshops, legal advice
Asociación Nacional de Hipertensión Pulmonar, Spain
Asociación Nacional de Hipertensión Pulmonar, Spain
Website:

http://www.hipertensionpulmonar.es/

Coberturas:

Pulmonary Vascular Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Pharma covigilance
Asociatia Romana a Bolnavilor de Tuberculoza (ARB-TB)
Asociatia Romana a Bolnavilor de Tuberculoza (ARB-TB)
Website:

http://www.arb-tb.ro/

Coberturas:

Tuberculosis

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public
Aspergillosis Trust
Aspergillosis Trust
Website:

https://aspergillosistrust.org/

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Raising funds for research
Associação Alfa1 de Portugal (AA1P)
Associação Alfa1 de Portugal (AA1P)
Website:

http://www.aa1p.pt/

Coberturas:

Copd,lung Disease In Children

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Associação de Transplantados Pulmonares de Portugal (ATPP), Portugal
Associação de Transplantados Pulmonares de Portugal (ATPP), Portugal
Website:

https://atpp.pt/

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Protection of the rights of lung transplant patients and transplant candidates
Associación Nacional de Enfermos de Sarcoidosis, Spain
Associación Nacional de Enfermos de Sarcoidosis, Spain
Website:

http://www.sarcoidosis.es/

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Communicating research and health policy to the public

Helping patients communicate with other patients via forums and support groups
Association Departementale des Insuffisants Respiratoires (ADIR31), France
Association Departementale des Insuffisants Respiratoires (ADIR31), France
Website:

http://www.adir31.fr

Coberturas:

Copd,sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Working with the media

Weekly meeting groups of therapeutic education
Association for Cystic Fibrosis, Greece
Association for Cystic Fibrosis, Greece
Website:

http://www.cfathess.gr/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Association for Patients with Lung Disease (APLD) - TURKEY
Association for Patients with Lung Disease (APLD) - TURKEY
Website:

www.ahdeder.com (under construction)

Coberturas:

Pulmonary Vascular Disease,sleep Disordered Breathing,other Lung Diseases,acute Lower Respiratory Infections,adult Asthma,bronchiectasis,copd,childhood Asthma,cystic Fibrosis,interstitial Lung Disease,lung Cancer,acute Respiratory Distress Syndrome,lung Disease In Children,occupational Lung Disease,rare And Orphan Lung Disease,tuberculosis

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Communicating research and health policy to the public

Lobbying health departments or governments
Association for the people with alpha-1 antitripsin deficency in Poland
Association for the people with alpha-1 antitripsin deficency in Poland
Website:

https://a1at.wordpress.com/

Coberturas:

Copd,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Lobbying health departments or governments
Association Histiocytose, France
Association Histiocytose, France
Website:

http://www.histiocytose.org/

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Giving funding for research
Association Nationale Française Déficit en Alpha-1 Antitrypsine (ADAAT), France
Association Nationale Française Déficit en Alpha-1 Antitrypsine (ADAAT), France
Website:

http://www.alpha1-france.org

Coberturas:

Acute Lower Respiratory Infections,adult Asthma,copd,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media
Association of Parents of Asthmatic Children of Zagreb
Association of Parents of Asthmatic Children of Zagreb
Website:

www.astma-udruga.com

Coberturas:

Childhood Asthma

Atividades:
Providing information for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Working with the media

Helping patients communicate with other patients via forums and support groups
Association of patients with respiratory failure and lung transplantation, Bulgaria
Association of patients with respiratory failure and lung transplantation, Bulgaria
Website:

https://www.facebook.com/aprflt/

Coberturas:

Rare And Orphan Lung Disease,pulmonary Vascular Disease,bronchiectasis,cystic Fibrosis,copd

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Lobbying health departments or governments

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Helping patients communicate with other patients via forums and support groups

Working with the media
Association pour la fibrose pulmonaire idiopathique Pierre ENJALRAN - France
Association pour la fibrose pulmonaire idiopathique Pierre ENJALRAN - France
Website:

https://fpi-asso.com/

Coberturas:

Rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Working with the media
Associazione Apnoici Italiani- ONLUS
Associazione Apnoici Italiani- ONLUS
Website:

http://www.apneedelsonno.it

Coberturas:

Sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Working with the media

Communicating with patients via social media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Helping patients communicate with other patients via forums and support groups

Lobbying health departments or governments
Associazione Italiana Pazienti BPCO Onlus
Associazione Italiana Pazienti BPCO Onlus
Website:

http://www.pazientibpco.it/

Coberturas:

Copd

Atividades:
Providing information for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Lobbying health departments or governments
Associazione Italiana Pazienti con Apnee del Sonno-ONLUS (A.I.P.A.S.-ONLUS)
Associazione Italiana Pazienti con Apnee del Sonno-ONLUS (A.I.P.A.S.-ONLUS)
Website:

http://www.sleepapnea-online.it

Coberturas:

Sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Working with the media

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Offering a helpline service for patients
Associazione Malattie Respiratorie (A.MA.RE), Italy
Associazione Malattie Respiratorie (A.MA.RE), Italy
Website:

http://amaresalute.it/

Coberturas:

Copd,interstitial Lung Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media
Associazione Nazionale Alfa1-AT-ONLUS, Italy
Associazione Nazionale Alfa1-AT-ONLUS, Italy
Website:

http://www.alfa1at.it/

Coberturas:

Other Lung Diseases,adult Asthma,bronchiectasis,copd,rare And Orphan Lung Disease

Atividades:
Lobbying health departments or governments

Giving funding for research

Communicating with patients via social media

Providing information for patients
Associazione Respirando, Italy
Associazione Respirando, Italy
Website:

http://associazionerespirando.org/index2.html

Coberturas:

Cystic Fibrosis,rare And Orphan Lung Disease,lung Disease In Children,sleep Disordered Breathing,acute Respiratory Distress Syndrome,other Lung Diseases

Atividades:
Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Offering a helpline service for patients

Providing advice for patients

Providing information for patients
Associazione RespiRARE Onlus per le malattie rare del polmone, Italy
Associazione RespiRARE Onlus per le malattie rare del polmone, Italy
Website:

http://www.respirare-onlus.eu/

Coberturas:

Rare And Orphan Lung Disease,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments
Associazione Respiriamo Insieme Onlus, Italy
Associazione Respiriamo Insieme Onlus, Italy
Website:

http://www.respiriamoinsieme.org/

Coberturas:

Adult Asthma,copd,bronchiectasis,acute Respiratory Distress Syndrome,acute Lower Respiratory Infections,interstitial Lung Disease

Atividades:
Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Providing advice for patients

Providing information for patients
Associazione ReSpirone (onlus)
Associazione ReSpirone (onlus)
Website:

http://www.respirone.it

Coberturas:

Adult Asthma,lung Disease In Children,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Giving funding for research

Raising public awareness of respiratory diseases

Working with the media
Asthma and Allergy Association, Latvia
Asthma and Allergy Association, Latvia
Website:

http://www.astmaalergija.lv/

Coberturas:

Adult Asthma,childhood Asthma

Atividades:
Communicating with patients via social media

Working with the media

Providing information for patients

Providing advice for patients
Asthma UK
Asthma UK
Website:

http://www.asthma.org.uk

Coberturas:

Adult Asthma,childhood Asthma

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Astma Allergi, Denmark
Astma Allergi, Denmark
Website:

http://www.astma-allergi.dk/

Coberturas:

Adult Asthma,childhood Asthma,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Astma en allergie koepel, Belgium
Astma en allergie koepel, Belgium
Website:

http://www.astma-en-allergiekoepel.be/

Coberturas:

Adult Asthma,childhood Asthma,copd

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Lobbying health departments or governments
Astma-Allergia-POCHP, Poland
Astma-Allergia-POCHP, Poland
Website:

http://www.astma-alergia-pochp.pl/

Coberturas:

Adult Asthma

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media
Belgian Association for Pulmonary fibrosis
Belgian Association for Pulmonary fibrosis
Website:

http://www.longfibrose.org/

Coberturas:

Rare And Orphan Lung Disease,interstitial Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Giving funding for research

Lobbying health departments or governments

Working with the media

Communicating with patients via social media

Raising public awareness of respiratory diseases
Belgian Cystic Fibrosis Association
Belgian Cystic Fibrosis Association
Website:

http://www.muco.be/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Breathe Bright Rest Easy Respiratory Group
Breathe Bright Rest Easy Respiratory Group
Website:

http://www.breathebrightresteasy.co.uk/

Coberturas:

Adult Asthma,copd

Atividades:
Providing information for patients

Providing advice for patients

Raising public awareness of respiratory diseases
Breathtakers OB Trust, UK
Breathtakers OB Trust, UK
Website:

http://www.breathtakers.org.uk/

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments
British Lung Foundation
British Lung Foundation
Website:

http://www.blf.org.uk

Coberturas:

Adult Asthma,childhood Asthma,copd,cystic Fibrosis,bronchiectasis,lung Disease In Children,tuberculosis,acute Lower Respiratory Infections,acute Respiratory Distress Syndrome,lung Cancer,pulmonary Vascular Disease,interstitial Lung Disease,sleep Disordered Breathing,occupational Lung Disease,other Lung Diseases,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Communicating research and health policy to the public
British Snoring & Sleep Apnoea Association
British Snoring & Sleep Apnoea Association
Website:

http://www.britishsnoring.co.uk

Coberturas:

Sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments
ČARO (Česká aliance proti chronickým respiračním onemocněním)
ČARO (Česká aliance proti chronickým respiračním onemocněním)
Website:

http://www.caro-gard.cz/

Coberturas:

Adult Asthma,copd,cystic Fibrosis,acute Lower Respiratory Infections,lung Cancer,tuberculosis,interstitial Lung Disease,occupational Lung Disease,sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social medi

Giving funding for research

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments

Cooperation between different specialists
Český občanský spolek proti plicním nemocem COPN - Czech Civic Association against Lung Diseases
Český občanský spolek proti plicním nemocem COPN - Czech Civic Association against Lung Diseases
Website:

http://www.copn.cz

Coberturas:

Copd,adult Asthma,childhood Asthma,bronchiectasis,interstitial Lung Disease,sleep Disordered Breathing,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
CF EUROPE
CF EUROPE
Website:

http://www.cf-europe.eu

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
CF Foundation MATIO, Poland
CF Foundation MATIO, Poland
Website:

http://www.mukowiscydoza.pl/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
CF Greece (Hellenic CF Association)
CF Greece (Hellenic CF Association)
Website:

http://www.cysticfibrosis.gr/index.php/en/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Helping patients communicate with other patients via forums and support groups
CF TEAM, Austria
CF TEAM, Austria
Website:

http://cf-team.at/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Working with the media

Lobbying health departments or governments
ChILD Lung Foundation (UK)
ChILD Lung Foundation (UK)
Website:

http://childlungfoundation.org

Coberturas:

Lung Disease In Children

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases
Communicable Diseases Intensive Care Association (INCURE), Ukraine
Communicable Diseases Intensive Care Association (INCURE), Ukraine
Website:

http://incure.info/

Coberturas:

Tuberculosis,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Working with the media

Lobbying health departments or governments

Providing information for doctors and health managers
COPD VZW, Belgium
COPD VZW, Belgium
Website:

https://www.copdvzw.be/

Coberturas:

Copd

Atividades:
Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Offering a helpline service for patients

Providing advice for patients

Providing information for patients
COPD - Deutschland e.V.
COPD - Deutschland e.V.
Website:

http://www.copd-deutschland.de/

Coberturas:

Bronchiectasis,copd,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
COPD Support Ireland
COPD Support Ireland
Website:

http://www.livingwithcopd.ie/

Coberturas:

Copd

Atividades:
Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Providing advice for patients

Providing information for patients
Cork COPD Support Group
Cork COPD Support Group
Website:

http://www.copdsupport.ie/

Coberturas:

Copd

Atividades:
We meet once in two months for an hour or so, some times with a professional. Our main activity is:

Helping patients communicate with other patients via forums and support groups
Croatian Alliance for Rare Diseases
Croatian Alliance for Rare Diseases
Website:

http://www.rijetke-bolesti.hr/

Coberturas:

Cystic Fibrosis,pulmonary Vascular Disease,sleep Disordered Breathing,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Cyprus Respiratory Patients Association
Cyprus Respiratory Patients Association
Website:

https://www.Facebook.com/pnevmonopatheis

Coberturas:

Acute Respiratory Distress Syndrome,bronchiectasis,childhood Asthma,copd,cystic Fibrosis,interstitial Lung Disease,lung Cancer,pulmonary Vascular Disease,occupational Lung Disease,tuberculosis,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Cystic Fibrosis Association of Slovenia
Cystic Fibrosis Association of Slovenia
Website:

http://www.drustvocf.si/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Cystic Fibrosis Ireland
Cystic Fibrosis Ireland
Website:

http://www.cfireland.ie/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Cystic Fibrosis UK
Cystic Fibrosis UK
Website:

http://www.cysticfibrosis.org.uk

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Danish Lung Association
Danish Lung Association
Website:

http://www.lunge.dk

Coberturas:

Acute Respiratory Distress Syndrome,acute Lower Respiratory Infections,adult Asthma,bronchiectasis,childhood Asthma,copd,cystic Fibrosis,interstitial Lung Disease,lung Cancer,lung Disease In Children,occupational Lung Disease,other Lung Diseases,pulmonary Vascular Disease,sleep Disordered Breathing,tuberculosis,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Deutsche Atemwegsliga e.V.
Deutsche Atemwegsliga e.V.
Website:

http://www.atemwegsliga.de

Coberturas:

Acute Lower Respiratory Infections,acute Respiratory Distress Syndrome,adult Asthma,bronchiectasis,childhood Asthma,copd,cystic Fibrosis,interstitial Lung Disease,lung Cancer,lung Disease In Children,pulmonary Vascular Disease,occupational Lung Disease,sleep Disordered Breathing,tuberculosis,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media
Deutsche Sarkoidose-Vereinigung e.V.
Deutsche Sarkoidose-Vereinigung e.V.
Website:

http://www.Sarkoidose.de

Coberturas:

Interstitial Lung Disease,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Stakeholder for Sarcoidosis patients in HTA and Reimbursement procedures
Deutscher Lungentag e.V.
Deutscher Lungentag e.V.
Website:

http://www.lungentag.de/

Coberturas:

Acute Lower Respiratory Infections,adult Asthma,bronchiectasis,childhood Asthma,copd,cystic Fibrosis,interstitial Lung Disease,lung Cancer,lung Disease In Children,pulmonary Vascular Disease,occupational Lung Disease,sleep Disordered Breathing,tuberculosis,other Lung Diseases,acute Respiratory Distress Syndrome

Atividades:
Each year the organisation focuses on a different subject although asthma and COPD remain the most important issues because of the huge number of patients

Raising public awareness of respiratory diseases

Working with the media
DPOC.PT
DPOC.PT
Website:

http://dpoc.pt/

Coberturas:

Copd

Atividades:
Providing information for patients

Providing advice for patients

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Lobbying health departments or governments
Dutch Pulmonary Fibrosis Society
Dutch Pulmonary Fibrosis Society
Website:

http://www.longfibrose.nl/

Coberturas:

Interstitial Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases
Estonian Allergy Federation
Estonian Allergy Federation
Website:

http://www.allergialiit.ee/

Coberturas:

Adult Asthma,childhood Asthma,lung Disease In Children,occupational Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Raising public awareness of respiratory diseases

Working with the media
Estonian Lung Association
Estonian Lung Association
Website:

http://www.kopsuliit.ee/

Coberturas:

Adult Asthma,copd

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media
European Alpha1 Foundation / Alpha1 Stiftung, Germany
European Alpha1 Foundation / Alpha1 Stiftung, Germany
Website:

http://www.alpha1-europe.eu/

Coberturas:

Rare And Orphan Lung Disease,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
European Cancer Patient Coalition
European Cancer Patient Coalition
Website:

http://www.ecpc.org/

Coberturas:

Lung Cancer

Atividades:
Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
European Federation of Allergy and Airways Diseases Patients' Associations (EFA)
European Federation of Allergy and Airways Diseases Patients' Associations (EFA)
Website:

http://www.efanet.org

Coberturas:

Adult Asthma,childhood Asthma,copd,lung Disease In Children

Atividades:
Providing information for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Project management
European Idiopathic Pulmonary Fibrosis & Related Disorders Federation ivzw
European Idiopathic Pulmonary Fibrosis & Related Disorders Federation ivzw
Website:

http://www.eu-ipff.org/

Coberturas:

Rare And Orphan Lung Disease,interstitial Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Lobbying health departments or governments

Working with the media

Raising public awareness of respiratory diseases

Coordinating between european IPF organisations

Helping patients to establish a national IPF organisation in countries were they do not exist yet
European pulmonary hypertension association (PHA)
European pulmonary hypertension association (PHA)
Website:

http://www.phaeurope.org/

Coberturas:

Pulmonary Vascular Disease,rare And Orphan Lung Disease,other Lung Diseases

Atividades:
Providing information for patients

Offering a helpline service for patients

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Federacion Española de Fibrosis Quística
Federacion Española de Fibrosis Quística
Website:

http://www.fibrosisquistica.org/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Federación Nacional de Asociaciones de Enfermedades Respiratorias (FENAER), Spain
Federación Nacional de Asociaciones de Enfermedades Respiratorias (FENAER), Spain
Website:

http://www.fenaer.es

Coberturas:

Adult Asthma,bronchiectasis,childhood Asthma,copd,lung Disease In Children,sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
FederASMA e ALLERGIE onlus – Federazione italiana pazienti
FederASMA e ALLERGIE onlus – Federazione italiana pazienti
Website:

http://www.federasma.org

Coberturas:

Adult Asthma,lung Disease In Children,childhood Asthma,copd

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Offering a helpline service for patients

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Fédération Française des Associations et Amicales de malades, Insuffisants ou handicapés Respiratoires (FFAAIR)
Fédération Française des Associations et Amicales de malades, Insuffisants ou handicapés Respiratoires (FFAAIR)
Website:

http://www.ffaair.org/

Coberturas:

Adult Asthma,bronchiectasis,copd,cystic Fibrosis,lung Disease In Children,sleep Disordered Breathing

Atividades:
Providing information for patients

Communicating with patients via social media

Communicating research and health policy to the public
Federazione Italiana IPF e Malattie Rare Polmonari (FIMARP), Italy
Federazione Italiana IPF e Malattie Rare Polmonari (FIMARP), Italy
Website:

http://www.fimarp.it/

Coberturas:

Interstitial Lung Disease,rare And Orphan Lung Disease

Atividades:
Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Giving funding for research

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Providing advice for patients

Providing information for patients
Finnish Allergy and Asthma Federation
Finnish Allergy and Asthma Federation
Website:

http://www.allergia.fi

Coberturas:

Adult Asthma,childhood Asthma

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Fondazione Ricera Fibrosi Cistica Onlus, Italy
Fondazione Ricera Fibrosi Cistica Onlus, Italy
Website:

http://www.fibrosicisticaricerca.it/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Promoting and supporting scientific research in cystic fibrosis

Communicating research and health policy to the public
Fonds des Affections respiratoires (FARES), Belgium
Fonds des Affections respiratoires (FARES), Belgium
Website:

http://www.fares.be/

Coberturas:

Adult Asthma,copd,tuberculosis

Atividades:
Providing information for patients

Raising public awareness of respiratory diseases

Lobbying health departments or governments
France Lymphangioléiomyomatose (FLAM)
France Lymphangioléiomyomatose (FLAM)
Website:

http://www.francelam.org/

Coberturas:

Rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media
Fundação Portuguesa do Pulmão
Fundação Portuguesa do Pulmão
Website:

http://www.fundacaoportuguesadopulmao.org

Coberturas:

Acute Lower Respiratory Infections,adult Asthma,bronchiectasis,childhood Asthma,copd,cystic Fibrosis,interstitial Lung Disease,lung Cancer,lung Disease In Children,sleep Disordered Breathing,tuberculosis,occupational Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media
Fundación contra la Hipertensión Pulmonar, Spain
Fundación contra la Hipertensión Pulmonar, Spain
Website:

http://www.fchp.es/

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helping service for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Fundación Lovexair, Spain
Fundación Lovexair, Spain
Website:

https://lovexair.com/

Coberturas:

Adult Asthma,bronchiectasis,childhood Asthma,copd,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helping service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Developing chronic respiratory disease self-management programs and working on a smoking helpline and a program to detect and prevent lung disease amongst the working population
Fundación Respiralia, Spain
Fundación Respiralia, Spain
Website:

http://www.respiralia.org/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Chest therapy, Kinesiology, Osteopathy and physical training sessions to patients
Fungal Infection Trust, UK
Fungal Infection Trust, UK
Website:

http://www.fungalinfectiontrust.org

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Working with the media

Offering a helpline service for patients

Recruiting patients for clinical trials

Communicating research and health policy to the public

Giving funding for research
Global Allergy Asthma Patient Platform, GAAPP
Global Allergy Asthma Patient Platform, GAAPP
Website:

http://www.ga2p2.org/

Coberturas:

Adult Asthma,childhood Asthma,copd,occupational Lung Disease,rare And Orphan Lung Disease,acute Lower Respiratory Infections

Atividades:
Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Offering a helpline service for patients

Providing advice for patients

Providing information for patients
HALO "self-help Association heart/lung-& lung transplantation" Belgium
HALO "self-help Association heart/lung-& lung transplantation" Belgium
Website:

http://www.halovzw.info

Coberturas:

Other Lung Diseases

Atividades:
Communicating with patients via social media

Raising public awareness of respiratory diseases

Helping patients communicate with other patients via forums and support groups

Offering a helpline service for patients

Providing information for patients

Providing advice for patients

Communicatijg research to patients
Hipertensión Pulmonar España Organización de Pacientes
Hipertensión Pulmonar España Organización de Pacientes
Website:

http://www.hipertension-pulmonar.com/

Coberturas:

Pulmonary Vascular Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Recruiting patients for clinical trials

Helping patients communicate with other patients via forums and support groups
Hungarian Cystic Fibrosis Foundation
Hungarian Cystic Fibrosis Foundation
Website:

http://www.ocfe.hu/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helping service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Lobbying health departments or governments
Hungarian Respiratory Patients Society
Hungarian Respiratory Patients Society
Website:

http://tudoklub.hu/lebe

Coberturas:

Acute Lower Respiratory Infections,adult Asthma,copd,lung Cancer,tuberculosis

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Lobbying health departments or governments
Hungarian Respiratory Society
Hungarian Respiratory Society
Website:

http://www.tudogyogyasz.hu

Coberturas:

Adult Asthma,copd,cystic Fibrosis,bronchiectasis,lung Disease In Children,tuberculosis,lung Cancer,interstitial Lung Disease,occupational Lung Disease,other Lung Diseases,pulmonary Vascular Disease,sleep Disordered Breathing,acute Lower Respiratory Infections,acute Respiratory Distress Syndrome,childhood Asthma

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Icelandic Lung Foundation
Icelandic Lung Foundation
Website:

https://www.lungu.is/

Coberturas:

Copd,sleep Disordered Breathing,acute Lower Respiratory Infections,adult Asthma,bronchiectasis,cystic Fibrosis,interstitial Lung Disease,lung Cancer,occupational Lung Disease,pulmonary Vascular Disease,rare And Orphan Lung Disease,childhood Asthma,tuberculosis

Atividades:
Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Giving funding for research

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Offering a helpline service for patients

Providing advice for patients

Providing information for patients
Inspira vida (Serbian Asthma and Allergy Association)
Inspira vida (Serbian Asthma and Allergy Association)
Website:

http://astma.rs/

Coberturas:

Adult Asthma,childhood Asthma,copd

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Irish Cancer Society
Irish Cancer Society
Website:

http://www.cancer.ie/

Coberturas:

Lung Cancer

Atividades:
Providing information for patients

Providing advice for patients

Offering a helping service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Irish Lung Fibrosis Association (ILFA)
Irish Lung Fibrosis Association (ILFA)
Website:

http://www.ilfa.ie

Coberturas:

Interstitial Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helping service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Irish Sarcoidosis Support Network
Irish Sarcoidosis Support Network
Website:

http://www.isarc.ie/

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helping service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Japan Federation of Patient Organizations for Respiratory Disease
Japan Federation of Patient Organizations for Respiratory Disease
Website:

http://www.jrs.or.jp/jrs_patient/

Coberturas:

Copd,bronchiectasis,pulmonary Vascular Disease,interstitial Lung Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments
JEDRA Organisation, Croatia
JEDRA Organisation, Croatia
Website:

http://www.jedra.com.hr/

Coberturas:

Acute Lower Respiratory Infections,adult Asthma,bronchiectasis,childhood Asthma,copd,cystic Fibrosis,interstitial Lung Disease,lung Cancer,pulmonary Vascular Disease,sleep Disordered Breathing,rare And Orphan Lung Disease,acute Respiratory Distress Syndrome

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Klub nemocných cystickou fibrózou, Czech Republic
Klub nemocných cystickou fibrózou, Czech Republic
Website:

http://www.cfklub.cz/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
L'Association Luxembourgeoise de Lutte contre la Mucoviscidose (ALLM)
L'Association Luxembourgeoise de Lutte contre la Mucoviscidose (ALLM)
Website:

http://www.allm.lu/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Giving funding for research

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments

Providing material and social support to patients
LAM Academy, Sweden
LAM Academy, Sweden
Website:

http://www.lamacademy.org/

Coberturas:

Rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Recruiting patients for clinical trials
LAM Action UK
LAM Action UK
Website:

http://lamaction.org/

Coberturas:

Rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Working with the media
Lam Italia Onlus
Lam Italia Onlus
Website:

http://www.lam-italia.org

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
LAM Selbsthilfe Deutschland (e.V.)
LAM Selbsthilfe Deutschland (e.V.)
Website:

http://www.lam-info.de/

Coberturas:

Rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Helping patients communicate with other patients via forums and support groups

Offering a helpline service for patients

Recruiting patients for clinical trials

Giving funding for research
LAM Support Ireland
LAM Support Ireland
Website:

www.lamsupportireland.ie

Coberturas:

Rare And Orphan Lung Disease

Atividades:
Providing information for patients
Latvijas Cistiskas fibrozes biedriba - Cystic Fibrosis Society, Latvia
Latvijas Cistiskas fibrozes biedriba - Cystic Fibrosis Society, Latvia
Website:

http://cistiskafibroze.lv/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Lega Italiana Anti Fumo (LIAF)
Lega Italiana Anti Fumo (LIAF)
Website:

http://www.liaf-onlus.org/

Coberturas:

Acute Lower Respiratory Infections,adult Asthma,bronchiectasis,copd,pulmonary Vascular Disease,sleep Disordered Breathing,acute Respiratory Distress Syndrome

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Liberia Asthma Society, Liberia
Liberia Asthma Society, Liberia
Website:

Coberturas:

Adult Asthma,childhood Asthma,pulmonary Vascular Disease

Atividades:
Providing information for patients

Providing advice for patients

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Lithuanian Council of Patient Organisations
Lithuanian Council of Patient Organisations
Website:

www.pacientutaryba.lt

Coberturas:

Adult Asthma,cystic Fibrosis,lung Cancer,pulmonary Vascular Disease,interstitial Lung Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments
Lithuanian Cystic Fibrosis Assosiation
Lithuanian Cystic Fibrosis Assosiation
Website:

http://www.cistinefibroze.lt/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Lobbying health departments or governments

Helping patients communicate with other patients via forums and support groups
Longfonds, Netherlands
Longfonds, Netherlands
Website:

https://www.longfonds.nl/

Coberturas:

Adult Asthma,bronchiectasis,copd,cystic Fibrosis,interstitial Lung Disease,lung Disease In Children,pulmonary Vascular Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Lobbying health departments or governments

Helping patients communicate with other patients via forums and support groups
LOT-Austria
LOT-Austria
Website:

http://www.selbsthilfe-lot.at/ueberunsvorstand.php

Coberturas:

Copd,cystic Fibrosis,pulmonary Vascular Disease,rare And Orphan Lung Disease,other Lung Diseases

Atividades:
Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Recruiting patients for clinical trials

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Offering a helpline service for patients

Providing advice for patients

Providing information for patients

Building up pan-european network for COPD, IPF and O2-long-term
Lung Foundation Australia
Lung Foundation Australia
Website:

https://lungfoundation.com.au/

Coberturas:

Pulmonary Vascular Disease,other Lung Diseases,copd,bronchiectasis,lung Cancer,lung Disease In Children,interstitial Lung Disease,occupational Lung Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support group

Recruiting patients for clinical trials

Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Giving funding for research
Lungenemphysem-COPD, Deutschland
Lungenemphysem-COPD, Deutschland
Website:

http://www.lungenemphysem-copd.de

Coberturas:

Bronchiectasis,copd,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media
Lungenfibrose e.V. - Deutschland
Lungenfibrose e.V. - Deutschland
Website:

https://www.lungenfibrose.de/

Coberturas:

Rare And Orphan Lung Disease,interstitial Lung Disease,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Communicating research and health policy to the public
Lungenfibrose Forum Austria
Lungenfibrose Forum Austria
Website:

https://www.lungenfibroseforum.at/

Coberturas:

Interstitial Lung Disease

Atividades:
Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Offering a helpline service for patients

Providing advice for patients

Providing information for patients
Lungenliga / Ligue pulmonaire / Lega polmonare - Switzerland
Lungenliga / Ligue pulmonaire / Lega polmonare - Switzerland
Website:

http://www.lungenliga.ch http://www.liguepulmonaire.ch http://www.legapolmonare.ch

Coberturas:

Cystic Fibrosis,lung Cancer,rare And Orphan Lung Disease,tuberculosis,copd,adult Asthma

Atividades:
Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Giving funding for research

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Offering a helpline service for patients

Providing advice for patients

Providing information for patients

Other: Taking care of patients (more than 80'000 Patients in Switzerland)
Lviv City Charitable Foundation of "Sister Dalila", Ukraine
Lviv City Charitable Foundation of "Sister Dalila", Ukraine
Website:

http://poryatunok.info/uk/

Coberturas:

Rare And Orphan Lung Disease,pulmonary Vascular Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media
Malta Health Network
Malta Health Network
Website:

https://www.maltahealthnetwork.org/

Coberturas:

Atividades:
Providing information for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
MCRN Hungary
MCRN Hungary
Website:

http://www.mcrn.hu

Coberturas:

Childhood Asthma,cystic Fibrosis,lung Disease In Children,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Recruiting patients for clinical trials

Lobbying health departments or governments
Merseyside Asbestos Victims Support Group, UK
Merseyside Asbestos Victims Support Group, UK
Website:

http://www.mavsg.org/

Coberturas:

Lung Cancer,occupational Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Lobbying health departments or governments
Mesothelioma Group
Mesothelioma Group
Website:

http://www.mesotheliomagroup.com

Coberturas:

Lung Cancer,occupational Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media
Mesothelioma Resource Online USA
Mesothelioma Resource Online USA
Website:

https://www.mesotheliomasymptoms.com/

Coberturas:

Lung Cancer,copd,occupational Lung Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Communicating research and health policy to the public
Mesothelioma UK
Mesothelioma UK
Website:

http://www.mesothelioma.uk.com/

Coberturas:

Lung Cancer,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Helping patients communicate with other patients via forums and support groups

Communicating research and health policy to the public
Morbus Osler Selbsthilfe e.V.
Morbus Osler Selbsthilfe e.V.
Website:

https://www.morbus-osler.de/de/

Coberturas:

Pulmonary Vascular Disease,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Giving funding for research

Communicating with patients via social media

Helping patients communicate with other patients via forums and support group
National Aspergillosis Centre, UK
National Aspergillosis Centre, UK
Website:

http://www.nationalaspergillosiscentre.org.uk

Coberturas:

Adult Asthma,childhood Asthma,cystic Fibrosis,tuberculosis,rare And Orphan Lung Disease,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Working with the media

Offering a helpline service for patients

Recruiting patients for clinical trials

Communicating research and health policy to the public
National Association for Cystic Fibrosis, Russia
National Association for Cystic Fibrosis, Russia
Website:

http://www.mukoviscidoz.org/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

The members of the organization are medical workers, researches, patients with CF and their parents and anyone who wants to improve the CF service in Russia
National Asthma Council Australia
National Asthma Council Australia
Website:

https://www.nationalasthma.org.au/

Coberturas:

Adult Asthma,childhood Asthma

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Nontuberculous Mycobacterial Info & Research
Nontuberculous Mycobacterial Info & Research
Website:

http://www.ntminfo.org/

Coberturas:

Bronchiectasis,copd,cystic Fibrosis,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Norwegian Asthma and Allergy Association
Norwegian Asthma and Allergy Association
Website:

http://www.naaf.no

Coberturas:

Adult Asthma,childhood Asthma,copd,lung Disease In Children

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Österreichische Lungenunion, Austria
Österreichische Lungenunion, Austria
Website:

http://www.lungenunion.at

Coberturas:

Acute Lower Respiratory Infections,adult Asthma,bronchiectasis,copd,interstitial Lung Disease,lung Cancer,lung Disease In Children,sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Pakistan Chest Society (Regd)
Pakistan Chest Society (Regd)
Website:

http://www.pakistanchestsociety.pk/

Coberturas:

Acute Lower Respiratory Infections,acute Respiratory Distress Syndrome,adult Asthma,bronchiectasis,copd,interstitial Lung Disease,lung Cancer,lung Disease In Children,occupational Lung Disease,tuberculosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Patienten-Bibliothek
Patienten-Bibliothek
Website:

http://www.patienten-bibliothek.de/_pb2015/pb/

Coberturas:

Acute Respiratory Distress Syndrome,acute Lower Respiratory Infections,adult Asthma,bronchiectasis,childhood Asthma,copd,cystic Fibrosis,interstitial Lung Disease,lung Cancer,lung Disease In Children,occupational Lung Disease,other Lung Diseases,pulmonary Vascular Disease,sleep Disordered Breathing,tuberculosis,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Working with the media
PCD Family Support Group UK
PCD Family Support Group UK
Website:

http://www.pcdsupport.org.uk

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Communicating research and health policy to the public
Pediatric Lung Association Pakistan
Pediatric Lung Association Pakistan
Website:

http://www.hhf.org.pk/

Coberturas:

Adult Asthma,childhood Asthma,cystic Fibrosis,bronchiectasis,lung Disease In Children,tuberculosis,acute Lower Respiratory Infections,interstitial Lung Disease,sleep Disordered Breathing,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments
Pembe Hanim - Association of Cancer Patients, Turkey
Pembe Hanim - Association of Cancer Patients, Turkey
Website:

http://www.pembehanim.com.tr/

Coberturas:

Acute Lower Respiratory Infections,adult Asthma,acute Respiratory Distress Syndrome,lung Cancer,sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Lobbying health departments or governments

Raising public awareness of respiratory diseases

Recruiting patients for clinical trials

Communicating research and health policy to the public

Helping patients communicate with other patients via forums and support groups

Working with the media
PH Belgium
PH Belgium
Website:

http://www.ph-vzw.be/

Coberturas:

Pulmonary Vascular Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
PHA Ukraine
PHA Ukraine
Website:

http://pha.org.ua/

Coberturas:

Pulmonary Vascular Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Plućna hipertenzija Bosne i Hercegovine - Association of Citizens of Pulmonary Hypertension "Breath", Bosnia and Herzegovina
Plućna hipertenzija Bosne i Hercegovine - Association of Citizens of Pulmonary Hypertension "Breath", Bosnia and Herzegovina
Website:

Coberturas:

Pulmonary Vascular Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Communicating with patients via social media

Lobbying health departments or governments

Raising public awareness of respiratory diseases

Helping patients communicate with other patients via forums and support groups

Working with the media
Polish Federation of Asthma, Allergy and COPD Patients
Polish Federation of Asthma, Allergy and COPD Patients
Website:

http://www.astma-alergia-pochp.pl/

Coberturas:

Acute Lower Respiratory Infections,adult Asthma,copd,lung Cancer

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Recruiting patients for clinical trials

Giving funding for research

Working with the media

Lobbying health departments or governments
Prévention des Allergies, Brussels
Prévention des Allergies, Brussels
Website:

http://www.oasis-allergies.org/

Coberturas:

Adult Asthma,copd

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Working in partnership with other associations
Pulmonary and allergic patients association of Slovenia
Pulmonary and allergic patients association of Slovenia
Website:

http://www.dpbs.si/

Coberturas:

Adult Asthma,copd,cystic Fibrosis,interstitial Lung Disease,lung Cancer,lung Disease In Children,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Pulmonary Fibrosis Advocates, USA
Pulmonary Fibrosis Advocates, USA
Website:

http://www.pfadvocates.org

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Lobbying health departments or governments
Pulmonary Fibrosis Foundation, USA
Pulmonary Fibrosis Foundation, USA
Website:

http://www.pulmonaryfibrosis.org/

Coberturas:

Interstitial Lung Disease

Atividades:
Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Giving funding for research

Recruiting patients for clinical trials

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Offering a helpline service for patients

Providing advice for patients

Providing information for patients
Pulmonary Fibrosis Trust, UK
Pulmonary Fibrosis Trust, UK
Website:

http://www.pulmonaryfibrosistrust.org

Coberturas:

Interstitial Lung Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Helping people live with Pulmonary Fibrosis including financial help where necessary
Pulmonary Fibrosis UK
Pulmonary Fibrosis UK
Website:

www.pulmonaryfibrosis.org.uk

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Communicating with patients via social media

Giving funding for research
Pulmonary Fibrosis Wales, UK
Pulmonary Fibrosis Wales, UK
Website:

http://www.pulmonaryfibrosiswales.co.uk

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases
Pulmonary Hypertension and Scleroderma Patient Association - Turkey
Pulmonary Hypertension and Scleroderma Patient Association - Turkey
Website:

http://www.pahssc.org.tr/

Coberturas:

Rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Pulmonary Hypertension Association "Moment Plus"Macedonia
Pulmonary Hypertension Association "Moment Plus"Macedonia
Website:

http://www.phmomentplus.com.mk/

Coberturas:

Pulmonary Vascular Disease

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments
Pulmonary Hypertension Association, UK
Pulmonary Hypertension Association, UK
Website:

http://www.phassociation.uk.com

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Pulmonary Hypertension Serbia (Plucna Hipertenzija Srbija)
Pulmonary Hypertension Serbia (Plucna Hipertenzija Srbija)
Website:

http://www.phserbia.rs/

Coberturas:

Pulmonary Vascular Disease,sleep Disordered Breathing,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Pulmonary Hypertention - Ukrainian Rare Disease Association (PHURDA)
Pulmonary Hypertention - Ukrainian Rare Disease Association (PHURDA)
Website:

http://poryatunok.info/uk/

Coberturas:

Rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media
Respira - Associação Portuguesa de Pessoas com DPOC e outras Doenças Respiratórias Crónicas
Respira - Associação Portuguesa de Pessoas com DPOC e outras Doenças Respiratórias Crónicas
Website:

http://www.respira.pt

Coberturas:

Bronchiectasis,copd,pulmonary Vascular Disease,occupational Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments
Respirlibre, France
Respirlibre, France
Website:

http://www.asthmamuseum.com

Coberturas:

Adult Asthma,copd,sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Romanian Cystic Fibrosis Association
Romanian Cystic Fibrosis Association
Website:

http://afcr.ro/

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments

Donations to patients
Romanian National Alliance for Rare Diseases
Romanian National Alliance for Rare Diseases
Website:

http://www.bolirareromania.ro/

Coberturas:

Cystic Fibrosis,pulmonary Vascular Disease,sleep Breathing Disorders,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Roy Castle Lung Cancer Foundation, UK
Roy Castle Lung Cancer Foundation, UK
Website:

http://www.roycastle.org/

Coberturas:

Lung Cancer

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Tobacco control initiatives
Sarcoïdose Belangenvereniging Nederland (SBN)
Website:

http://www.sarcoidose.nl/

Coberturas:

Interstitial Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials Giving funding for research

Raising public awareness of respiratory diseases

Lobbying health departments or governments
SarcoidosisUK
SarcoidosisUK
Website:

http://sarcoidosisuk.org

Coberturas:

Other Lung Diseases

Atividades:
Providing information for sarcoidosis patients

Providing support for sarcoidosis patients

Raising awareness of sarcoidosis and advocating for patients

Funding research into sarcoidosis
Schweizerische Sarkoidose-Vereinigung SSARV-AScS
Schweizerische Sarkoidose-Vereinigung SSARV-AScS
Website:

http://www.sarkoidose.ch/de/

Coberturas:

Interstitial Lung Disease,rare And Orphan Lung Disease,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Helping patients communicate with other patients via forums and support groups

Working with the media

Lungenliga Switzerland
Scottish Association for Sleep Apnoea
Scottish Association for Sleep Apnoea
Website:

http://www.scottishsleepapnoea.co.uk/

Coberturas:

Other Lung Diseases,sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Lobbying health departments or governments

Patient support without any medical input
Selbsthilfegruppe Schlafapnoe Österreich
Selbsthilfegruppe Schlafapnoe Österreich
Website:

http://www.schlafapnoe-shg.at/

Coberturas:

Sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Raising public awareness of respiratory diseases

Working with the media

Communicate patients safety after general anaesthesia
Serbian Association of Sarcoidosis, Serbia
Serbian Association of Sarcoidosis, Serbia
Website:

Coberturas:

Other Lung Diseases,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Sleep Apnoea Trust Association, UK
Sleep Apnoea Trust Association, UK
Website:

http://www.sleep-apnoea-trust.org

Coberturas:

Sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Working with the media

Lobbying health departments or governments
Sociedad Latina de Hipertensión Pulmonar
Sociedad Latina de Hipertensión Pulmonar
Website:

https://sociedadlatinahp.org/

Coberturas:

Pulmonary Vascular Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public
Spitali Civil Korce, Albania
Spitali Civil Korce, Albania
Website:

Coberturas:

Acute Lower Respiratory Infections,acute Respiratory Distress Syndrome,adult Asthma,bronchiectasis,copd,cystic Fibrosis,interstitial Lung Disease,lung Cancer,lung Disease In Children,pulmonary Vascular Disease,occupational Lung Disease,sleep Disordered Breathing,tuberculosis

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Recruiting patients for clinical trials

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Stichting Astma Bestrijding, Netherlands
Stichting Astma Bestrijding, Netherlands
Website:

http://www.astmabestrijding.nl

Coberturas:

Adult Asthma,copd

Atividades:
Giving funding for research
Stichting Voedselallergie
Stichting Voedselallergie
Website:

http://www.voedselallergie.nl/

Coberturas:

Other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Stowarzyszenie Walki z Rakiem Płuca, Poland
Stowarzyszenie Walki z Rakiem Płuca, Poland
Website:

http://www.rakpluca.org.pl/

Coberturas:

Lung Cancer

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Working with the media
Swedish Asthma- an allergy association
Swedish Asthma- an allergy association
Website:

http://www.astmaoallergiforbundet.se

Coberturas:

Adult Asthma,childhood Asthma,lung Disease In Children

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Swiss Cystic Fibrosis Association (CFCH)
Swiss Cystic Fibrosis Association (CFCH)
Website:

http://www.cfch.ch

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
Swiss Groupe for Interstitial and Orphan Lung Diseases (SIOLD)
Swiss Groupe for Interstitial and Orphan Lung Diseases (SIOLD)
Website:

http://www.siold.ch

Coberturas:

Interstitial Lung Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Recruiting patients for clinical trials

Encouraging patients to complete surveys to help us learn more about patient experiences across Europe
Swiss Society for Pulmonary Hypertension (SSPH)
Swiss Society for Pulmonary Hypertension (SSPH)
Website:

http://www.sgph.ch

Coberturas:

Pulmonary Vascular Disease

Atividades:
Providing information for patients

Providing advice for patients

Recruiting patients for clinical trials

Communicating research and health policy to the public
Take That TB, Germany
Take That TB, Germany
Website:

http://www.tb-net.org/index.php/takethattb

Coberturas:

Tuberculosis

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases
TB Alert, UK
TB Alert, UK
Website:

https://www.tbalert.org/

Coberturas:

Tuberculosis

Atividades:
Providing information for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
The Asthma Society of Ireland
The Asthma Society of Ireland
Website:

http://www.asthma.ie

Coberturas:

Adult Asthma

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Education of health care professionals and Fundraising
The Butterfly Trust, Scotland
The Butterfly Trust, Scotland
Website:

http://www.butterflytrust.org.uk

Coberturas:

Cystic Fibrosis,other Lung Diseases

Atividades:
Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Providing social support and massage therapy in hospital
The Irish Sleep Apnoea Trust
The Irish Sleep Apnoea Trust
Website:

http://www.irishhealth.com/psg/sleepap.html

Coberturas:

Sleep Disordered Breathing

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
The June Hancock Mesothelioma Research Fund, UK
The June Hancock Mesothelioma Research Fund, UK
Website:

http://www.junehancockfund.org

Coberturas:

Other Lung Diseases,lung Cancer,occupational Lung Disease,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Giving funding for research

Raising public awareness of respiratory diseases
The Norwegian Alpha-1-association
The Norwegian Alpha-1-association
Website:

http://www.lhl.no/Om-LHL/Interessegrupper/Alfa-1/

Coberturas:

Other Lung Diseases,rare And Orphan Lung Disease

Atividades:
Providing information for patients

Communicating with patients via social media

Recruiting patients for clinical trials

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Reviewing questions for research surveys
The Norwegian Heart and Lung Patient Organization
The Norwegian Heart and Lung Patient Organization
Website:

http://www.lhl.no

Coberturas:

Copd,tuberculosis

Atividades:
Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Giving funding for research

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Offering a helpline service for patients

Providing advice for patients

Providing information for patients
The Organisation for Respiratory Health in Finland
The Organisation for Respiratory Health in Finland
Website:

http://www.hengitysliitto.fi

Coberturas:

Adult Asthma,bronchiectasis,childhood Asthma,copd,cystic Fibrosis,lung Disease In Children,pulmonary Vascular Disease,sleep Disordered Breathing,tuberculosis,rare And Orphan Lung Disease,other Lung Diseases,occupational Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments
The Pleural Mesothelioma Center, USA
The Pleural Mesothelioma Center, USA
Website:

http://www.pleuralmesothelioma.com

Coberturas:

Lung Cancer,occupational Lung Disease

Atividades:
Raising public awareness of respiratory diseases

Helping patients communicate with other patients via forums and support groups

Offering a helpline service for patients

Providing information for patients
The Swedish Heart and Lung Association
The Swedish Heart and Lung Association
Website:

http://www.hjart-lung.se/

Coberturas:

Copd,tuberculosis

Atividades:
Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Providing information for patients

Giving funding for research

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments

Translating surveys into your language to enable the views of patients in your country to be heard

Setting research priorities from the patient perspective

Joining ELF Patient Advisory Committee to represent patients at a European level
Un Respiro di Speranza/A breath of hope, Italy
Un Respiro di Speranza/A breath of hope, Italy
Website:

http://www.unrespirodisperanza.it/

Coberturas:

Interstitial Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Recruiting patients for clinical trials

Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases
Unione Trapiantati Polmone di Padova Onlus - Union of Lung Transplant Patients, Padova
Unione Trapiantati Polmone di Padova Onlus - Union of Lung Transplant Patients, Padova
Website:

www.unitp-pd.it

Coberturas:

Other Lung Diseases,bronchiectasis,rare And Orphan Lung Disease,cystic Fibrosis,interstitial Lung Disease

Atividades:
Providing information for patients

Providing advice for patients

Offering a helpline service for patients

Communicating research and health policy to the public

Working with the media

Raising public awareness of respiratory diseases

Giving funding for research

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media
Vaincre
Vaincre
Website:

http://www.elcwp.org/New/Fr/index.html

Coberturas:

Lung Cancer,occupational Lung Disease

Atividades:
Lobbying health departments or governments

Working with the media

Communicating research and health policy to the public

Raising public awareness of respiratory diseases

Providing advice for patients

Providing information for patients

Other: Attending Lung Cancer scientific events (symposium, presentations, formations...) in our country (Belgium or French speaking countries) in order to publish summaries in our bimonthly columns
WALCE Italy
WALCE Italy
Website:

http://www.womenagainstlungcancer.eu

Coberturas:

Lung Cancer,other Lung Diseases

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Working with the media

Offering a helpline service for patients
Zdruzenie za Cisticna Fibroza, Macedonia
Zdruzenie za Cisticna Fibroza, Macedonia
Website:

http://www.cf.mk

Coberturas:

Cystic Fibrosis

Atividades:
Providing information for patients

Providing advice for patients

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Lobbying health departments or governments
Аssociation "Pulmonary Hypertension Patients Assistance", Belarus
Аssociation "Pulmonary Hypertension Patients Assistance", Belarus
Website:

http://phbelarus.by/

Coberturas:

Pulmonary Vascular Disease

Atividades:
Providing information for patients

Providing advice for patients

Helping patients communicate with other patients via forums and support groups

Communicating with patients via social media

Helping patients communicate with other patients via forums and support groups

Raising public awareness of respiratory diseases

Communicating research and health policy to the public

Working with the media

Lobbying health departments or governments