Patient organisation round up: September 2019
In the last month, patient organisations across Europe have been attending congresses, meetings and workshops to share knowledge and experiences of lung conditions, helping to improve care and treatment.
Image: Alpha1 Foundation Conference
Alpha-1 Deutschland test COPD patients for Alpha-1-Antitrypsin deficiency at the German COPD congress
Alpha-1 Germany attended the German COPD Congress in Hattingen this month. Alpha-1-Antitrypsin deficiency is common in people with COPD, but many patients are not aware of this. Alpha-1 Germany had a stand in the exhibition where they offered tests and were able to detect Alpha-1-Antitrypsin deficiency in COPD patients and give them advice.
More than 2500 guests attended this year's COPD Congress. In addition to those affected, relatives and interested parties were also present, as well as many well-known physiotherapists, medical specialists and doctors.
Visit the Alpha-1 Germany website.
Alfa-1 España organises meeting for Alpha-1 patients and families
The Spanish Alpha-1 Association has organised the second national meeting of patients and families affected by Alpha-1 Antitrypsin deficiency, which will be held on 23-29 September. The meeting will take place in the Spanish city of Burgos and will deal with topics related to research, treatment and the day-to-day life of those affected by this rare genetic condition.
Alpha-1 Ireland prepares for upcoming congress in Dublin
Alpha-1 Ireland are preparing for their Alpha-1 Conference 2019 taking place on Friday 25 October in Dublin. This free conference is an informal educational meeting for people affected by Alpha-1 with a packed agenda of interesting talks. Tea and coffee will be available for attendees on arrival with lunch also provided. A place can be reserved by emailing email@example.com.
Alpha-1 Foundation holds webinar on Alpha-1 advocacy and public affairs
In collaboration with the Rhode Public Policy (RPP) Group, the Alpha-1 Foundation will hold a webinar on Alpha-1 advocacy and public affairs. Through this webinar viewers can learn more about advocacy activities at European and national levels and how to take part in this process. This training will focus on outreach strategies to policymakers and how to transform organisations’ objectives into political asks.
New projects and raising awareness
Fundación Contra la Hipertensión Pulmonar (FCHP) launches new awareness project
The Foundation Against Pulmonary Hypertension (FCHP) has received financial support by the “Red Solidaria” programme to carry out the project “Pulmonary Hypertension Awareness”. This project aims to raise awareness of this condition since it is considered a rare disease which is disabling, progressive and life threatening. FCHP will use social media to spread knowledge as well as create information leaflets and give talks in various hospitals.
SarcoidosisUK introduces its new information service
SarcoidosisUK is very excited to announce their newest information service – Patient Information Videos. The charity has visited sarcoidosis experts across the UK and filmed them explaining sarcoidosis. The videos will help anyone affected by sarcoidosis to understand more about their condition.
Watch Dr Desmond Kidd from the Royal Free Hospital talk about sarcoidosis and neurosarcoidosis.
PAHSSc organises IPF Awareness Week, 16 – 22 September
Four educational meetings involving 400 hundred patients have been held in Izmir, Turkey between May and September 2019. These meetings were organised by the patients’ society of PAHSSc and rare diseases, and covered various topics related to IPF.
PAHSSc is also planning a ‘Cure for IPF’ run at Ege University in İzmir on 21 September with patients and supporters for awareness.
Alongside these activities, PAHSSc is working to raise awareness about the Presumed Consent Organ Donation model, which would enable lung transplantation in Turkey.
ApneuVereniging Vlaanderen discusses future plans for sleep apnoea treatment
The Flanders Apnoea Association held an autumn meeting in which a specialist doctor and general practitioner were invited to talk. The general practitioner who attended is planning research on the management and treatment of sleep apnoea, which has the potential to benefit the members of the Flanders Apnoea Association.
PHURDA Ukraine patient member climbs mountain in support of pulmonary hypertension
A pulmonary hypertension patient climbed 2061 metres to the top of the Hoverla mountain in Ukraine. Nadia Nus, who has aspired to climb this mountain for a long time, talked about climbing it for others who also suffer from this condition: “While climbing the mountain I was thinking about my PH friends. It was my personal achievement, but I did it for them as well”.
Meetings and workshops
Aspergillosis Trust (AT) patient stories to be exhibited at RAREsummit19
The National Aspergillosis Centre (NAC), Manchester, are exhibiting at RAREsummit19 on behalf of Aspergillosis Trust (AT). NAC are presenting a patient journey poster, along with two patient stories.
Sandra Hicks, co-founder of AT will be recording a video for ELF to present at the ERS Congress in Madrid, Spain. It's on the Primary Immunodeficiency Syndrome she has, which is causing atypical lung infections and bronchiectasis.
The scheduled skydive by Yvonne Gibson was cancelled due to poor weather conditions, meaning that there is still time to donate. The rescheduled date is 20th October. Visit Yvonne’s Just Giving page.
Visit the Aspergillus Trust website and follow them on Twitter @aspertrust.
Fondazione Ricerca Fibrosi Cistica (FFC) holds first Adult Cystic Fibrosis International Workshop
The Italian Cystic Fibrosis Research Foundation held its first ever Adult Cystic Fibrosis International Workshop in Milan. Thanks to improvements in treatments of cystic fibrosis, people affected by the condition often reach adulthood, meaning it is no longer just a paediatric disease. Caregivers and clinicians face new challenges in dealing with adult patients. The workshop gave the opportunity for people to share experiences and ideas. Representatives from scientific research, clinics and patients attended and spoke at the event.
PCD Family Support Group organises Scottish PCD day, 5 October
The PCD Family Support Group is organising a PCD (primary ciliary dyskinesia) day in Scotland at the Queen Elizabeth University Hospital, Glasgow. Attendees will show their support and hear about the latest research into PCD. Everyone is welcome to attend, and the event will include lunch and lots of fun activities.