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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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
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
Spanish Cystic Fibrosis Federation (FEFQ)
Spanish Cystic Fibrosis Federation (FEFQ)

Spanish Cystic Fibrosis Federation (FEFQ)

The Spanish Cystic Fibrosis Federation (FEFQ) is an organisation that brings together and represents 15 Cystic Fibrosis associations from all over Spain. The mission is to bring together CF associations to work together to improve the quality of life of people with CF and their families. In addition, FEFQ want CF to be a disease that is known and led by a strongly united federation that represents all the associations and is their main support.


Covers:

  • Cystic fibrosis

https://fibrosisquistica.org/
Stichting PHA Nederland
Stichting PHA Nederland

Stichting PHA Nederland

Pulmonary Hypertension Association the Netherlands

Covers:

  • Pulmonary Hypertension

www.stichtingpulmonalehypertensie.nl
TB Europe Coalition (TBEC)
TB Europe Coalition (TBEC)

TB Europe Coalition (TBEC)

TB Europe Coalition (TBEC) is a regional advocacy network of civil society organisations and individuals in the WHO Europe region committed to end tuberculosis (TB). The network aims to strengthen the role of civil society within the regional response to TB, and ensure political and financial commitments to end TB.


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.tbcoalition.eu
The LAM Foundation
The LAM Foundation

The LAM Foundation

The LAM Foundation urgently seeks safe and effective treatments, and ultimately a cure, for lymphangioleiomyomatosis (LAM) through advocacy and the funding of promising research. We are dedicated to serving the scientific, medical and patient communities by offering information, resources and a worldwide network of hope and support.


Covers:

  • LAM
  • Rare and orphan lung disease

http://thelamfoundation.org
Tracheo-Oesophageal Fistula Support
Tracheo-Oesophageal Fistula Support

Tracheo-Oesophageal Fistula Support

Tracheo-Oesophageal Fistula Support (TOFS) offers support to all people born with the rare congenital conditions oesophageal atresia (OA) and tracheo-oesophageal fistula (TOF), commonly known as OA/TOF.  These conditions strike people across all ethnicities and personal situations, and the impacts are often lifelong.  Approximately 190 OA/TOF babies are born each year in the UK, and T.O.F.S. estimates the UK population of OA/TOF people as about 3500 children and 7500 adults.  T.O.F.S is a membership organisation registered as a charity and company limited by guarantee.  It is the largest English-speaking OA/TOF support group in the world. The majority of our membership lives is in the UK, but T.O.F.S has members in 70 countries worldwide. Our membership grows on average by 270 new members annually. Our mission is for those born with OA/TOF to be able to live unlimited, unconstrained by the impact of being born with these conditions.


Covers:

  • Acute lower respiratory infections
  • Bronchiectasis
  • Rare and orphan lung disease
  • Upper airways diseases

www.tofs.org.uk
Turkey SMA Foundation
Turkey SMA Foundation

Turkey SMA Foundation

The Turkey SMA Foundation aims to ensure the active participation of individuals with SMA in our country in social life, to carry out activities that support the activities to be carried out by considering the benefit of patients and their families.


Covers:

  • Lung disease in children
  • Other lung diseases

https://www.sma.org.tr