Patient organisation round up: December 2019
Patient organisations have been making strong public appearances to raise awareness of lung conditions and talking to experts to represent the patient voice, aiming to work with professionals to improve treatment and care for people living with lung conditions.
Image: PAHSSc at the Istanbul marathon
PAHSSc campaign at Istanbul marathon
The 41st Istanbul Marathon was attended by almost 100,000 people. Members of the Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) made a strong presence with their t-shirts, chants and banners.
Three of the participants were raising funds to provide portable oxygen concentrators to those who cannot afford them to allow them to leave their homes safely. The campaign was a huge success, raising around 45,000 Turkish Lira (€7,100).
ApneuVereniging Vlaanderen patients meet with sleep apnoea experts
The Belgian organisation for sleep apnoea patients was invited to present at the autumn meeting of the Belgian Association for Sleep Research and Sleep Medicine. The organisation spoke about the "8 questions from patients" and launched the new quarterly "ApneuKrant" (Apnoea Newspaper). The first copy of the newspaper was given to the 180 sleep doctors and staff present.
APEFPI meets experts to discuss living with IPF
The French association for idiopathic pulmonary fibrosis (APEFPI) has organized meetings with patients and hospital pneumology departments for the last quarter of 2019. The meetings are a great opportunity to learn about the latest research in idiopathic pulmonary fibrosis (IPF) and for patients and experts to discuss different aspects of living with IPF: side-effects of treatments, physical activity, nutrition, isolation, psychological support and quality of life.
Alpha-1 Foundation launches Alpha-1 Global Hub centres project
The Alpha-1 Foundation has officially opened applications for its newest project – the Alpha-1 Global Hub Centers. The programme aims to create 5-6 centers around the world to serve as resource centers for less established Alpha-1 patient organisations. The Alpha-1 Foundation will provide a $4,000 grant to each Hub Center to support the work and activities in 2020.
NEUMOAI gets involved with World Pneumonia Day
On 12 November, members of Spanish patient organisation for pneumonia (NEUMOAI) took part in a conference held at the University Hospital of Barcelona for the 10th World Pneumonia Day.
The president of NEUMOAI was also involved in the first training course for respiratory patient organisations organised by SeparPacientes, as well as presenting two abstracts at the third SeparPacientes congress.
Registration open for Australian Lung Cancer Conference
In acknowledgement of Lung Cancer Awareness Month, Lung Foundation Australia has announced the Australian Lung Cancer Conference 2020: A Time of Hope in Lung Cancer. Registrations and abstracts are now open. The Foundation will also host a Lung Cancer Community Forum as part of the conference, specifically for lung cancer patients and their families.
Fundació Respiralia joins the Solidarity Talent Network
The Respiralia Foundation recently joined the Botín Foundation’s exclusive Solidarity Talent Network. Being part of the network gives organistions access to training workshops, a grant to be able to improve communications and the possibility to work with some of the most prominent companies in Spain.
The Respiralia Foundation has also launched a fundraising project through the #DKVGiving Tuesday initiative. The DKV Seguros organisation has selected the Respiralia Foundation’s project as one of the best six projects in Spain. This company will donate €2,000 if the Respiralia Foundation manages to raise €2,000.
PHA Europe publishes new edition of Mariposa journal
PHA Europe has published its latest edition of the Mariposa journal. This edition gives an insight into the World Pulmonary Hypertension Day (WPHD) celebration on both an EU and member association level. WPHD has a long history and is a very successful series of events, so this edition collected the highlights.
EFA presents #ShowLeadership campaign at EU parliament
EFA presented #ShowLeadership at the European Parliament in Strasbourg. #ShowLeadership is a patient-driven campaign encouraging action among all decision-makers who could help allergy, asthma and chronic obstructive pulmonary disease (COPD) patients manage their conditions. EFA also launched its ACCESS patient report on asthma and COPD diagnosis, care, prevention and empowerment. For World COPD Day they created and distributed social media toolkits and plans.
Asthma UK and BLF to merge
Asthma UK and the British Lung Foundation (BLF) have announced their intention to merge. They say the move will strengthen and build on the existing collaboration between both organisations, while freeing up £2 million a year for research spending.
Aspergillosis Trust materials displayed at exhibiton
PhD student and fungal researcher Jennifer Shelton did an exhibition at Imperial Lates ‘Infectious’ event. On behalf of the Aspergillosis Trust (AT), she displayed AT awareness items and a diagnostic journey poster, as well as the stories of how long it took AT members to be diagnosed. She asked people to fill in questionnaires about whether they had heard of aspergillosis before their visit – most people hadn’t.
AT is preparing various activities to raise further awareness of aspergillosis for World Aspergillosis Day on 27 February 2020.
FederASMA e ALLERGIE holds patient empowerment seminar
FederASMA e ALLERGIE held a seminar on asthma and COPD patient empowerment, which was attended by 35 patients and healthcare professionals.
The association also gathered 32 patient organisations to sign a letter to the Ministry of Health with hopes of preventing plans to replace biological medicines with biosimilars. This plan would have negative impacts on people using biological medicines prescribed by their doctor to manage their lung conditions.
Alpha1 Deutschland trains group leaders
Alpha1 Germany trained almost 40 group leaders and their vice-chairs at an event in Leipzig. After a day of visiting a plasma donation centre and processing plant, internal topics were discussed and a knowledge exchange took place. Everything about the association and the work of its self-help groups was discussed extensively.