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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PCD Support UK
PCD Support UK

PCD Support UK

We are PCD Support UK. We're here for those affected by PCD, we talk about PCD as widely as possible and we champion research to improve its diagnosis, management.

Primary Ciliary Dyskinesia (PCD) is a rare, genetic disease affecting around 1 in 15,000 people in the UK. It is caused by abnormal motile cilia (motile cilia are the microscopic hairs that beat in the airways, sweeping secretions out of the respiratory tract). PCD can affect the lungs, nose, sinuses, ears and fertility.


Covers:

  • Primary Ciliary Dyskinesia (PCD)

www.pcdsupport.org.uk
Pulmonālās hipertensijas biedrība (PHB)
Pulmonālās hipertensijas biedrība (PHB)

Pulmonālās hipertensijas biedrība (PHB)

Pulmonary Hypertension Society of Latvia

Covers:

  • Pulmonary Hypertension

www.phlatvia.lv
Pulmonale Hypertensie vzw (PH vzw)
Pulmonale Hypertensie vzw (PH vzw)

Pulmonale Hypertensie vzw (PH vzw)

Pulmonary Hypertension vzw


Covers:

  • Pulmonary Hypertension

www.ph-vzw.be
Pulmonary Fibrosis Trust (PFT), UK
Pulmonary Fibrosis Trust (PFT), UK

Pulmonary Fibrosis Trust (PFT), UK

Our aim is to offer support and comfort for those affected by pulmonary fibrosis.


Covers:

  • Pulmonary Fibrosis

www.pftrust.org
Pulmonary Hypertension Association UK (PHA UK)
Pulmonary Hypertension Association UK (PHA UK)

Pulmonary Hypertension Association UK (PHA UK)

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.


Covers:

  • Pulmonary Hypertension

www.phauk.org
Pulmonary Hypertension Association, USA
Pulmonary Hypertension Association, USA

Pulmonary Hypertension Association, USA


Covers:

  • Pulmonary Hypertension

www.phassociation.org
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
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
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
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
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