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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ChILD Lung Foundation, UK
ChILD Lung Foundation, UK

ChILD Lung Foundation, UK


Covers:

  • ChILD

www.childlungfoundation.org
Chilean Pulmonary Hypertension Association
Chilean Pulmonary Hypertension Association

Chilean Pulmonary Hypertension Association


Covers:

  • Pulmonary Hypertension

http://www.asociacionhapchi.com
Colombian Foundation for lung cancer, asthma, COPD and other respiratory and oncological diseases
Colombian Foundation for lung cancer, asthma, COPD and other respiratory and oncological diseases

Colombian Foundation for lung cancer, asthma, COPD and other respiratory and oncological diseases

We are a non-profit foundation working to improve the quality of life for people with respiratory and oncological diseases and their families. Our goal is to empower patients, promote education about their health, and provide a support network.


Covers:

  • Acute lower respiratory infections
  • Acute respiratory distress syndrome
  • Adult asthma
  • Allergies
  • Alpha-1 antitrypsin deficiency
  • Aspergillosis
  • 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

https://fundacioninspirat.org/
COPD – Deutschland e.V.
COPD – Deutschland e.V.

COPD – Deutschland e.V.

COPD Germany

Covers:

  • COPD

www.copd-deutschland.de
Cystic Fibrosis Australia (CFA)
Cystic Fibrosis Australia (CFA)

Cystic Fibrosis Australia (CFA)

Cystic Fibrosis Australia (CFA) is the peak patient body in Australia and our remit is to support the broad cystic fibrosis (CF) community through Advocacy, Research and Clinical Improvement.

CFA is committed to improving clinical practice and patient outcomes with the aim of extending life expectancy from 47 to 55 years by 2025. CFA is the subject matter expert for government, industry and the media.

CFA also supports state and territory CF bodies who provide valuable services to the CF community.


Covers:

  • Cystic fibrosis

www.cysticfibrosis.org.au
Cystic Fibrosis Europe (CFE)
Cystic Fibrosis Europe (CFE)

Cystic Fibrosis Europe (CFE)

CFE is striving for a longer and better life for people with cystic fibrosis. CFE envisages a future where a final cure is found and access is given to all persons with Cystic Fibrosis. By supporting national patient organisations and building expertise and advocacy capacity for European policy, research and care, we will drive up standards for everyone living with CF in Europe.


Covers:

  • Cystic fibrosis

www.cf-europe.eu
Deutsche Atemwegsliga e.V.
Deutsche Atemwegsliga e.V.

Deutsche Atemwegsliga e.V.

German Respiratory League

The German Respiratory League is committed to providing the best possible care for patients with respiratory and lung diseases. To this end, we inform the public through regular media activities, including social media such as Facebook, Twitter, Instagram and YouTube. For physicians in practices and clinics, we provide recommendations and guidelines written by experts on the diagnosis and treatment of respiratory and pulmonary diseases. For patients and family members, we keep a wide range of information available. The Respiratory League is a valuable resource for those seeking quality-assured information on prevention, diagnosis, therapy and rehabilitation of lung 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.atemwegsliga.de
Deutsche Sarkoidose-Vereinigung e.V. (DSV)
Deutsche Sarkoidose-Vereinigung e.V. (DSV)

Deutsche Sarkoidose-Vereinigung e.V. (DSV)

Sarcoidosis Germany

Covers:

  • Sarcoidosis

www.Sarkoidose.de
Eesti Kopsuliit
Eesti Kopsuliit

Eesti Kopsuliit

Estonian Lung Association

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.kopsuliit.ee
Esophageal Atresia Global Support Groups (EAT)
Esophageal Atresia Global Support Groups (EAT)

Esophageal Atresia Global Support Groups (EAT)

Our vision is improved health, and quality of life, for patients born with esophageal atresia. We will achieve this through collaboration between patients, their families, international patient support groups and medical professionals to promote and support best-practice health care. We speak in a unified global voice, advocating on behalf of patients and their families affected by esophageal atresia.


Covers:

  • Other lung diseases
  • Rare and orphan lung disease

http://www.we-are-eat.org
European Federation of Allergy and Airways Diseases Patients’ Associations (EFA)
European Federation of Allergy and Airways Diseases Patients’ Associations (EFA)

European Federation of Allergy and Airways Diseases Patients’ Associations (EFA)

The European Federation of Allergy and Airways Diseases Patients' Associations (EFA) is the voice of the 200 million people living with allergy, asthma and chronic obstructive pulmonary disease (COPD) in Europe. We bring together 39 national associations from 24 countries and channel their knowledge and demands to the European institutions. We connect European stakeholders to ignite change and bridge the policy gaps on allergy and airways diseases so that patients live uncompromised lives, have the right and access to the best quality care and a safe environment.



www.efanet.org
European Forum for Research and Education in Allergy and Airways Diseases (EUFOREA)
European Forum for Research and Education in Allergy and Airways Diseases (EUFOREA)

European Forum for Research and Education in Allergy and Airways Diseases (EUFOREA)

All EUFOREA activities are directly related to reducing the prevalence and burden of allergies and airway diseases with a focus on digital solutions related to the three pillars of EUFOREA - Research, Education & Advocacy


Covers:

  • Acute lower respiratory infections
  • Acute respiratory distress syndrome
  • Allergies
  • Asthma
  • COVID-19
  • Sleep apnoea
  • Sleep disordered breathing
  • Upper airways diseases

www.euforea.eu
European Pulmonary Fibrosis Federation (EU-PFF)
European Pulmonary Fibrosis Federation (EU-PFF)

European Pulmonary Fibrosis Federation (EU-PFF)

Established in 2016, the European Pulmonary Fibrosis Federation (EU-PFF) is a Belgium Registered not-for-profit umbrella organisation for Pulmonary Fibrosis patient organisations in Europe. Together with our member organisations and partners , we work to raise awareness of Pulmonary Fibrosis on a political and public level, in healthcare and policy, treatment and research, and with a focus on differences and similarities from country to country across these areas.

To this end, we collaborate closely with medical experts and researchers across Europe and the world aiming to put a spotlight on this disease, its diagnostic pathway and existing treatment. We monitor and contribute to research and the potential development of new treatment modalities. We contribute to scientific articles, surveys and reports and are a established and trusted patient involvement partner. We provide trusted information and webinars in collaboration with our healthcare partners to provide updates on all aspects of the disease for our members and the PF Community. We have also organised the first ever held in Europe PF Patient Summits.

We raise awareness of Pulmonary Fibrosis through our annual awareness campaign each September. We strongly collaborate with other organisations around the world to exchange best practices, outreach to healthcare authorities and to provide education on Pulmonary Fibrosis.


Covers:

  • Idiopathic pulmonary fibrosis
  • Pulmonary Fibrosis

www.eu-pff.org
European Pulmonary Hypertension Association (PHA Europe)
European Pulmonary Hypertension Association (PHA Europe)

European Pulmonary Hypertension Association (PHA Europe)

PHA Europe is the umbrella organisation for national associations of patients living with pulmonary hypertension (PH) in Europe. It was founded in Vienna, Austria, in 2003 and is registered as an international non-profit organisation.

Our main aims are the following:

  • improve access to expert care
  • improve awareness and screening
  • encourage clinical research and innovation
  • empower patient groups
  • ensure the availability of psychosocial support

Covers:

  • Pulmonary Hypertension

www.phaeurope.org
FairLife Lung Cancer Care
FairLife Lung Cancer Care

FairLife Lung Cancer Care

Fairlife- Lung Cancer Care is the first non-profit organization in Greece dedicated to lung cancer the leading cause of deaths from cancer in our country and worldwide.
FairLife L.C.C. was created in memory of Simon Bell who lost the battle with lung cancer in August 2020.

FairLife Lung Cancer Care aspires to support and represent all lung cancer patients in Greece, as well as their families and caregivers.

We are a group of people with the common vision to beat lung cancer by raising public awareness regarding early detection. We are determined to help patients have access to effective treatment, clinical trials and offer them improved quality of life, for as long as possible.

Our goal is supported by lung cancer scientific experts, from Greece and abroad, with the assistance of volunteers, patients, and caregivers.


Covers:

  • Lung cancer

www.fairlifelcc.com
Federación Española de Asociaciones de Pacientes Alérgicos y con Enfermedades Respiratorias (FENAER)
Federación Española de Asociaciones de Pacientes Alérgicos y con Enfermedades Respiratorias (FENAER)

Federación Española de Asociaciones de Pacientes Alérgicos y con Enfermedades Respiratorias (FENAER)

Spanish Federation of Allergy and Airways Diseases Patients’ Associations (FENAER)

FENAER works for the defence of the rights of respiratory patients, the improvement of the care they receive and the awareness of the public and health administrations on the impact of these 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.fenaer.es
FederASMA e ALLERGIE Odv
FederASMA e ALLERGIE Odv

FederASMA e ALLERGIE Odv

Federasma and Allergy Patient Federation, Italy

 

We support patients to recognise and manage the illnesses listed below through campaigns and initiatives. We are in touch with all institutional fields to develop laws and conditions that will help patients.


Covers:

  • Acute lower respiratory infections
  • Allergies
  • Asthma
  • Bronchiectasis
  • Childhood asthma
  • COPD
  • COVID-19
  • Occupational lung disease
  • Pneumonia
  • Sleep apnoea

www.federasmaeallergie.org
Fédération Française des associations & amicales des malades insuffisants ou handicapés respiratoires (FFAAIR)
Fédération Française des associations & amicales des malades insuffisants ou handicapés respiratoires (FFAAIR)

Fédération Française des associations & amicales des malades insuffisants ou handicapés respiratoires (FFAAIR)

French Federation of Associations of respiratory patients (FFAAIR)

The FFAAIR and its 60 associations in all France work to favour the improving of patients’ life quality, to protect their interests, to promote health policies adapted to the need of patients. The FFAAIR is managed by volunteers: patients and sympathisers. This Federation is involved in actions concerning the information and the protection of the patients’ rights in the framework of the recognition of the respiratory diseases. The FFAAIR has elaborated the Charter of the patients who receive the care at home. This Chart determines the rights and responsibilities of home-care personnel and 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.ffaair.org