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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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
Udruga oboljelih od sarkoidoze
Udruga oboljelih od sarkoidoze

Udruga oboljelih od sarkoidoze

The Croatian Association of Patients with Sarcoidosis (UOS) tries to provide support to patients and their families through its activities and through this group. Unfortunately, patients have thousands of questions after the diagnosis, and in the hospital they will not find out what sarcoidosis is, how to live with it, what to expect, what is the extent of the disease and what are the degrees of the disease. Faced with reduced life opportunities, they will ask themselves questions about their rights to protection and social assistance. We are here together to answer various questions and contribute to the understanding of the disease and the way of life with it by sharing experiences.


Covers:

  • Sarcoidosis

sarkoidoza.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
Udruženje pacijenata s alergijama, astmom i atopijskim dermatitisom
Udruženje pacijenata s alergijama, astmom i atopijskim dermatitisom

Udruženje pacijenata s alergijama, astmom i atopijskim dermatitisom

Association of patients with asthma, allergies and atopic dermatitis

The Organisation for Patients with Allergies, Asthma and Atopic Dermatitis (AAA), a not-for-profit organization is the only patient organization for people with atopic diseases in Bosnia and Herzegovina, with an unique online community of more than 10 000 patients.
Our vision is to be recognized as the most trusted ally serving the asthma and allergy community.
AAA mission is dedicated to saving lives and reducing the burden of disease for people with asthma and allergies through support, advocacy, education and research.
Our core values are: · Patient-Centric · Compassion · Trust · Advocacy · Innovation ·


Covers:

  • Allergies
  • Asthma

www.aaa.ba
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
  • 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.jrs.or.jp/jrs_patient