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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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
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
  • Acute respiratory failure
  • Adult asthma
  • Allergies
  • Allergy
  • Alpha-1 antitrypsin deficiency
  • Aspergillosis
  • Asthma
  • Bronchiectasis
  • Bronchiolitis
  • Bronchopulmonary dysplasia
  • ChILD
  • Childhood asthma
  • COPD
  • Cough
  • COVID-19
  • Croup
  • Cystic fibrosis
  • Emphysema
  • Histiocytosis
  • Idiopathic interstitial pneumonia
  • Idiopathic pulmonary fibrosis
  • Interstitial lung disease
  • IPF
  • LAM
  • Laryngotracheobronchitis
  • Lung cancer
  • Lung disease in children
  • Lung metastases
  • Lung surgery
  • Lung transplantation
  • Mediastinal tumors
  • 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
  • Rare ILD/DPLD
  • Sarcoidosis
  • Sleep apnoea
  • Sleep breathing disorders
  • Sleep disordered breathing
  • Smoking cessation
  • Tuberculosis
  • Upper airways diseases

www.tbcoalition.eu
Udruženje građana oboljelih od plućne hipertenzije “Dah”- u Bosni i Hercegovini
Udruženje građana oboljelih od plućne hipertenzije “Dah”- u Bosni i Hercegovini

Udruženje građana oboljelih od plućne hipertenzije “Dah”- u Bosni i Hercegovini

Association of Citizens with Pulmonary Hypertension "Breath" - in Bosnia and Herzegovina

Our goal is raising awareness about pulmonary hypertension and providing support to patients. We are the only association for patients with pulmonary hypertension in Bosnia and Herzegovina advocating for better position of patients within our country.


Covers:

  • Pulmonary Hypertension

http://www.phbih-dah.com/informacije/informacije/plucna-hipertenzija.html
Un Respiro di Speranza
Un Respiro di Speranza

Un Respiro di Speranza

A Breath of Hope, Italy

A Breath of Hope, is an association of patients, doctors and volunteers that helps people with Idiopathic Pulmonary Fibrosis (IPF) to get out of a condition of isolation and wants to accompany them on a path of treatment for a diagnosis that is difficult to face. The association has proactive purposes with the aim of helping to support patients with IPF and rare lung diseases, and their families. The goal is to stimulate institutions, raise awareness and support research through a path to be shared.


Covers:

  • Idiopathic pulmonary fibrosis

www.unrespirodisperanza.it
Unione Trapiantati Polmone – Padova ODV
Unione Trapiantati Polmone – Padova ODV

Unione Trapiantati Polmone – Padova ODV

Union of Lung Transplant Patients – Padua, Italy

Our organisation was founded by a group of lung transplant recipient patients in order to support patients with rare lung diseases before and after a transplant.


Covers:

  • Lung transplantation

www.oltrelamalattia.it
Women Against Lung Cancer in Europe (WALCE)
Women Against Lung Cancer in Europe (WALCE)

Women Against Lung Cancer in Europe (WALCE)

Women Against Lung Cancer in Europe (WALCE) is a non-profit Organisation founded in 2006, based in Italy and networking at the European level and completely dedicated to people affected by lung cancer and their families. The main focuses are the education and the support of patients as well as awareness and primary prevention campaigns for the general public. WALCE is actively working to reduce disparities in access to diagnostics and care and to improve the extensive molecular screening, access to clinical trials and innovative treatments in Europe.


Covers:

  • Lung cancer

www.womenagainstlungcancer.eu
Асоцијација за Пулмонална Хипертензија Момент Плус Македонија
Асоцијација за Пулмонална Хипертензија Момент Плус Македонија

Асоцијација за Пулмонална Хипертензија Момент Плус Македонија

Association Pulmonary Hypertension Moment Plus Macedonia

Association Pulmonary Hypertension Moment Plus Macedonia is established as a non-partisan, non-governmental, and non-profit organisation, established on the basis of freely and voluntarily expressed will of its members united to protect the rights of people pulmonary hypertension and its assisting of the city of Gevgelija, the Republic of Macedonia and beyond.


Covers:

  • Pulmonary Hypertension

www.phmomentplus.com.mk
Асоціація рідкісного захворювання України – Легенева гіпертензія (PHURDA Ukraine)
Асоціація рідкісного захворювання України – Легенева гіпертензія (PHURDA Ukraine)

Асоціація рідкісного захворювання України – Легенева гіпертензія (PHURDA Ukraine)

Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA Ukraine)

PHURDA assists in providing patients with pulmonary hypertension (children and adults) with information, psychological, legal, medical assistance in the form of medicines and medical equipment, information support before and after transplantation of the heart, lungs, heart-lung complex.


Covers:

  • Pulmonary Hypertension

www.poryatunok.info/uk/
日本呼吸器疾患患者団体連合会
日本呼吸器疾患患者団体連合会

日本呼吸器疾患患者団体連合会

Japan Federation of Patient Organizations for Respiratory Diseases

Founded by the Japanese Respiratory Society (JRS) is this major patient organisation for respiratory disease in Japan. Respiratory professionals and patients working together to for better respiratory medicine and care.


Covers:

  • Acute lower respiratory infections
  • Acute respiratory distress syndrome
  • Acute respiratory failure
  • Adult asthma
  • Allergies
  • Allergy
  • Alpha-1 antitrypsin deficiency
  • Aspergillosis
  • Asthma
  • Bronchiectasis
  • Bronchiolitis
  • Bronchopulmonary dysplasia
  • ChILD
  • Childhood asthma
  • COPD
  • Cough
  • COVID-19
  • Croup
  • Cystic fibrosis
  • Histiocytosis
  • Idiopathic interstitial pneumonia
  • Idiopathic pulmonary fibrosis
  • Interstitial lung disease
  • IPF
  • LAM
  • Laryngotracheobronchitis
  • Lung cancer
  • Lung disease in children
  • Lung metastases
  • Lung surgery
  • Lung transplantation
  • Mediastinal tumors
  • 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
  • Rare ILD/DPLD
  • Sarcoidosis
  • Sleep apnoea
  • Sleep breathing disorders
  • Sleep disordered breathing
  • Smoking cessation
  • Tuberculosis
  • Upper airways diseases

www.jrs.or.jp/jrs_patient
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