The ELF Patient Organisation Network is open to all and includes respiratory patient organisations in Europe.
Search for patient organisations, either by region, country or disease, using the filters below. More detailed information is available for the patient organisations that have provided them.
Are you a respiratory patient organisation working in Europe? Would you like to be part of the network? Please take 5 minutes to tell us about your organisation, and we will add you to our network.
Pulmonary Hypertension vzw
The PFNI was set up by respiratory consultant Eoin Murtagh and specialist respiratory nurse Pat Gorman in 1995. We provide support, guidance, advice and signposting to sufferers of pulmonary fibrosis and their families from all over Northern Ireland. We have recently become a charity and are working to provide a bespoke respite facility for sufferers and their families. We work with all five health trusts here and also form part of the all party working group on lung health for our nation.
Our aim is to offer support and comfort for those affected by pulmonary fibrosis.
From its launch in the year 2000, the PHA UK has now grown to almost 4,500 members. Our community is like no other; a unique group of people committed to supporting each other and raising awareness of this serious condition in the hope of one day, finding a cure.
We are a dedicated organization dedicated to patient support, research and awareness of pulmonary hypertension.
Pulmonary Hypertension Serbia is a voluntary non-governmental organization, non-partisan and non-profit association of individuals and legal entities, established to achieve goals in the field of improvement, protection, education, and rights of patients with pulmonary hypertension.
Since 2015, it has been a member of the national patient association PH Europe, based in Vienna, which includes more than 40 European countries, including Austria, Belgium, Bosnia and Herzegovina, Bulgaria, Italy, Ireland, Israel, Germany, France, Denmark, Portugal, Macedonia, Hungary, Croatia, Lithuania, Czech Republic, Sweden, Switzerland, Ukraine, Turkey, etc.
PH Serbia, together with PH Europe, works collaboratively to raise awareness about PH throughout Serbia and Europe, promote optimal standards of care for people living with this condition, ensure the availability of all approved treatments, and encourage research for new drugs and therapies.
Non-profit patient organisation for rare diseases related to pulmonary hypertension in Turkey.
Vision: To be a National Association of reference in the area of Chronic Respiratory Diseases.
Mission: To contribute to the prevention and treatment of respiratory diseases and to be a pillar in the defence of the interests and rights of persons with COPD and other chronic respiratory diseases.
Vision: Healthy lungs and clean air for all.
Mission: To improve the respiratory health and well-being of Ghanaians and mankind especially, the lives of vulnerable children, youth and the elderly in deprived communities and mining areas through education, clinical care and research, human resource development and support of national and international public health activities in respiratory diseases and allergy.
Our approach:
The Respiratory Diseases and Allergy Foundation (RDAF) will commence with a particular focus on:
Aims/objectives:
Respiriamo Insieme is a non-profit organisation in Italy that works toward making sure that patients with breathing, immunological and allergic pathologies can find the right cure. Reducing the weight of the disease for the patients, their families, and caregivers; we aim to do this through advocacy, education, support, and research.
The Swedish Heart and Lung Association is a Non-Governmental Organisation that unites people with cardiovascular and lung diseases. Our most important objective is to improve living conditions for people with cardiovascular and lung diseases. We are a politically and religiously independent association; founded in 1939 and have been governed by its members ever since. Our president is Ms Inger Ros. We have around 37 000 members in our national association. In order to communicate with its members, a periodical publication named Status is distributed nationwide.
Roy Castle Lung Cancer Foundation is the charity that gives help and hope to people affected by lung cancer in the UK. The charity aims to support people living with lung cancer and save lives.
The organisation of lung patients was founded on 20 May 1997. Such an organisation was necessary because people suffering from lung diseases had no platform for their issues. The main goal of the organisation is to work on welfare and interest issues of lung patients by e.g. keeping up active social activities, encouraging information and research on the diseases and consequences, and focusing on prevention issues, counselling and information on the rights of the patients.
Šance pro plíce is dedicated to:
SarcoidosisUK is a small charity that exists to provide support and information for people with sarcoidosis, and fund research into a cure for the condition. SarcoidosisUK is dedicated to funding at least one major piece of research per year, and will continue to do this until a cure is found.
The Sarkoidose Selbsthilfe Schleswig-Holstein is a self-help group that was initially active in Schleswig-Holstein, Germany. However, we quickly realized that we are very isolated and need more contacts and outreach for a rare disease. In the meantime, we have spread our work over 5 additional locations and can thus reach around 500 patients in person throughout Germany. With our app for sarcoidosis patients, we have multiplied our reach even further to almost 2,000 patients. We all work on voluntary basis, no participant has to be member or pay a fee. Our aim is to provide sarcoidosispatients with very good and correct informations, with as few barriers as possible and all this at no cost.
