ELF Patient Organisation Network

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.

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Pulmonary Hypertension Serbia
Pulmonary Hypertension Serbia

Pulmonary Hypertension Serbia

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.


Covers:

  • Pulmonary Hypertension

https://www.phserbia.rs/
Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSc)
Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSc)

Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSc)

Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc), Turkey

Non-profit patient organisation for rare diseases related to pulmonary hypertension in Turkey.


Covers:

  • Pulmonary Hypertension

www.pahssc.org.tr
Respira – Associação Portuguesa de Pessoas com Dpoc e outras Doenças REespiratórias Crónicas
Respira – Associação Portuguesa de Pessoas com Dpoc e outras Doenças REespiratórias Crónicas

Respira – Associação Portuguesa de Pessoas com Dpoc e outras Doenças REespiratórias Crónicas

Portuguese Association of people with COPD and other chronic respiratory diseases (Respira)

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.


Covers:

  • Acute lower respiratory infections
  • Acute respiratory distress syndrome
  • Adult asthma
  • Allergies
  • Alpha-1 antitrypsin deficiency
  • Asthma
  • Bronchiectasis
  • ChILD
  • Childhood asthma
  • COPD
  • Cough
  • COVID-19
  • Cystic fibrosis
  • Idiopathic pulmonary fibrosis
  • Interstitial lung disease
  • LAM
  • Lung cancer
  • Lung disease in children
  • Lung surgery
  • Lung transplantation
  • Mesothelioma
  • Non-tuberculosis mycobacteria
  • Occupational lung disease
  • Other lung diseases
  • Pneumonia
  • Pneumothorax
  • Primary Ciliary Dyskinesia (PCD)
  • Pulmonary arterial hypertension
  • Pulmonary embolism
  • Pulmonary Fibrosis
  • Pulmonary Hypertension
  • Pulmonary vascular disease
  • Rare and orphan lung disease
  • Sarcoidosis
  • Sleep apnoea
  • Sleep disordered breathing
  • Smoking cessation
  • Tuberculosis
  • Upper airways diseases

www.respira.pt
Respiratory Diseases and Allergy Organization
Respiratory Diseases and Allergy Organization

Respiratory Diseases and Allergy Organization

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:

  • Education - How to keep your lungs healthy and understanding the symptoms of lung diseases.
  • Awareness - Observe lung health month "November" in conjunction with lung health campaigns.
  • Advocacy - Ensure lung health is a national priority. Focusing on early detection of lung disease (including lung cancer) and addressing inequalities.
  • Information - Publish information about all aspects of lung health and all lung diseases including lung cancer.
  • Research - Promote quality research in to lung health, including the prevention, detection and treatment of lung disorders.

Aims/objectives:

  • To promote continuing education about lung health, associated life style issues and matters connected to respiratory diseases through awareness creation.
  • To give opportunity to health care professionals (students, nurses, doctors, public health workers etc) to acquire skills and knowledge in respiratory health through internship programs.
  • To promote equitable access to evidence based care for respiratory diseases.
  • To co-operate with other agencies helping people with health issues and promoting research, detection and treatment.
  • To undertake publication of information about respiratory disease, cancers, treatment and support.
  • To promote early diagnosis of lung diseases and recommend methods of treatment.
  • To promote facilities for treatment of respiratory diseases and associated health issues and to support individuals suffering from respiratory diseases.
  • To develop support groups of volunteers, medical specialists and medical teams to assist in advising and promoting favourable outcomes in lung health needs and education and fulfilment of the purpose of the Foundation.
  • To promote quality research into lung health, supporting research centres, hospitals, and facilities researching prevention, detection and treatment of lung disorders

Covers:

  • Acute lower respiratory infections
  • Acute respiratory distress syndrome
  • Allergies
  • Alpha-1 antitrypsin deficiency
  • Asthma
  • Bronchiectasis
  • COPD
  • COVID-19
  • Non-tuberculosis mycobacteria
  • Pneumonia
  • Pulmonary embolism
  • Sleep apnoea
  • Sleep disordered breathing
  • Smoking cessation
  • Upper airways diseases

Respiriamo Insieme
Respiriamo Insieme

Respiriamo Insieme

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.


Covers:

  • Acute lower respiratory infections
  • Acute respiratory distress syndrome
  • Adult asthma
  • Allergies
  • Alpha-1 antitrypsin deficiency
  • Asthma
  • Bronchiectasis
  • ChILD
  • Childhood asthma
  • COPD
  • Cough
  • COVID-19
  • Cystic fibrosis
  • Idiopathic pulmonary fibrosis
  • Interstitial lung disease
  • LAM
  • Lung cancer
  • Lung disease in children
  • Lung surgery
  • Lung transplantation
  • Mesothelioma
  • Non-tuberculosis mycobacteria
  • Occupational lung disease
  • Other lung diseases
  • Pneumonia
  • Pneumothorax
  • Primary Ciliary Dyskinesia (PCD)
  • Pulmonary arterial hypertension
  • Pulmonary embolism
  • Pulmonary Fibrosis
  • Pulmonary Hypertension
  • Pulmonary vascular disease
  • Rare and orphan lung disease
  • Sarcoidosis
  • Sleep apnoea
  • Sleep disordered breathing
  • Smoking cessation
  • Tuberculosis
  • Upper airways diseases

www.respiriamoinsieme.org
Riksförbundet HjärtLung
Riksförbundet HjärtLung

Riksförbundet HjärtLung

Swedish Heart and Lung Association

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.


Covers:

  • Acute lower respiratory infections
  • Acute respiratory distress syndrome
  • Adult asthma
  • Allergies
  • Alpha-1 antitrypsin deficiency
  • Asthma
  • Bronchiectasis
  • ChILD
  • Childhood asthma
  • COPD
  • Cough
  • COVID-19
  • Cystic fibrosis
  • Idiopathic pulmonary fibrosis
  • Interstitial lung disease
  • LAM
  • Lung cancer
  • Lung disease in children
  • Lung surgery
  • Lung transplantation
  • Mesothelioma
  • Non-tuberculosis mycobacteria
  • Occupational lung disease
  • Other lung diseases
  • Pneumonia
  • Pneumothorax
  • Primary Ciliary Dyskinesia (PCD)
  • Pulmonary arterial hypertension
  • Pulmonary embolism
  • Pulmonary Fibrosis
  • Pulmonary Hypertension
  • Pulmonary vascular disease
  • Rare and orphan lung disease
  • Sarcoidosis
  • Sleep apnoea
  • Sleep disordered breathing
  • Smoking cessation
  • Tuberculosis
  • Upper airways diseases

www.hjart-lung.se
Roy Castle Lung Cancer Foundation
Roy Castle Lung Cancer Foundation

Roy Castle Lung Cancer Foundation

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.


Covers:

  • Lung cancer

https://www.roycastle.org/
Samtök Lungnasjúklinga
Samtök Lungnasjúklinga

Samtök Lungnasjúklinga

Icelandic Lung Association

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.


Covers:

  • Acute lower respiratory infections
  • Acute respiratory distress syndrome
  • Adult asthma
  • Allergies
  • Alpha-1 antitrypsin deficiency
  • Asthma
  • Bronchiectasis
  • ChILD
  • Childhood asthma
  • COPD
  • Cough
  • COVID-19
  • Cystic fibrosis
  • Idiopathic pulmonary fibrosis
  • Interstitial lung disease
  • LAM
  • Lung cancer
  • Lung disease in children
  • Lung surgery
  • Lung transplantation
  • Mesothelioma
  • Non-tuberculosis mycobacteria
  • Occupational lung disease
  • Other lung diseases
  • Pneumonia
  • Pneumothorax
  • Primary Ciliary Dyskinesia (PCD)
  • Pulmonary arterial hypertension
  • Pulmonary embolism
  • Pulmonary Fibrosis
  • Pulmonary Hypertension
  • Pulmonary vascular disease
  • Rare and orphan lung disease
  • Sarcoidosis
  • Sleep apnoea
  • Sleep disordered breathing
  • Smoking cessation
  • Tuberculosis
  • Upper airways diseases

www.lungu.is
Sarcoïdose.nl
Sarcoïdose.nl

Sarcoïdose.nl

www.sarcoidose.nl


Covers:

  • Sarcoidosis

www.sarcoidose.nl
SarcoidosisUK
SarcoidosisUK

SarcoidosisUK

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.


Covers:

  • Sarcoidosis

www.sarcoidosisuk.org
Sarkoidose Selbsthilfe Schleswig-Holstein
Sarkoidose Selbsthilfe Schleswig-Holstein

Sarkoidose Selbsthilfe Schleswig-Holstein

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.


Covers:

  • Sarcoidosis
  • Smoking cessation

http://sarkoidose-selbsthilfe.eu
Schweizerische Sarkoidose-Vereinigung / Association Suisse contre la Sarcoïdose (SSARV – AscS)
Schweizerische Sarkoidose-Vereinigung / Association Suisse contre la Sarcoïdose (SSARV – AscS)

Schweizerische Sarkoidose-Vereinigung / Association Suisse contre la Sarcoïdose (SSARV – AscS)

Swiss Sarcoidosis Association (SSARV – AscS)

www.sarkoidose.ch

www.sarcoidose.ch


Covers:

  • Sarcoidosis

www.sarkoidose.ch
Scottish Association for Sleep Apnoea (SASA)
Scottish Association for Sleep Apnoea (SASA)

Scottish Association for Sleep Apnoea (SASA)

SASA exists to:

  • increase public and professional awareness and understanding of Sleep Apnoea;
  • promote research and the dissemination of the results; and
  • provide support for Sleep Apnoea sufferers and their families.

Covers:

  • Sleep apnoea

www.scottishsleepapnoea.co.uk
Sevilla Respira
Sevilla Respira

Sevilla Respira


Covers:

  • Adult asthma
  • Allergies
  • Asthma
  • Bronchiectasis

http://www.sevillarespira.org
Sleep Apnoea Self Help Group Austria
Sleep Apnoea Self Help Group Austria

Sleep Apnoea Self Help Group Austria


Covers:

  • Sleep apnoea
  • Sleep disordered breathing

http://www.ssoe.at
Sleep Apnoea Trust (SATA)
Sleep Apnoea Trust (SATA)

Sleep Apnoea Trust (SATA)

We work to improve the lives of sleep apnoea patients, their partners and their families. Founded in 1996 and funded by patients, SATA is a patient support charity run mainly by patient volunteers. As we are completely independent, we are the "Patients Voice". SATA achieves its goals through education, advocacy, raising awareness and assisting research and development.


Covers:

  • Sleep apnoea

www.sleep-apnoea-trust.org
Sleep Disorder Support Foundation (SDSF), Ireland
Sleep Disorder Support Foundation (SDSF), Ireland

Sleep Disorder Support Foundation (SDSF), Ireland

Voluntary organisation providing information, support and advocacy for people (and their families) suffering from respiratory sleep disorders and sleep disorders in general.


Covers:

  • Sleep apnoea

www.sdsf.ie
Sociedad Latina de Hipertensión Pulmonar (SLHP)
Sociedad Latina de Hipertensión Pulmonar (SLHP)

Sociedad Latina de Hipertensión Pulmonar (SLHP)


Covers:

  • Pulmonary Hypertension

http://www.sociedadlatinahp.org