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.

Join network
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
Fundació Respiralia
Fundació Respiralia

Fundació Respiralia

Respiralia Foundation

We are a non-profit organisation dedicated to treating people with cystic fibrosis (CF) in the Balearic Islands. Our mission is to increase the quality of life of these people and make people aware about this disease. Our vision is to become a reference for families with CF in Spain and at an international level.


Covers:

  • Cystic fibrosis

www.respiralia.org
Fundación Contra la Hipertensión Pulmonar (FCHP)
Fundación Contra la Hipertensión Pulmonar (FCHP)

Fundación Contra la Hipertensión Pulmonar (FCHP)

Foundation Against Pulmonary Hypertension (FCHP)

We are for psycho-social care, health care and scientific and genetic research. To provide all kinds of help and promote the social and occupational integration of people affected by Pulmonary Hypertension, to provide information, training and guidance to these patients and their families. In addition to the management, promotion and monitoring of research programmes on this pathology and its dissemination to society.


Covers:

  • Pulmonary Hypertension

www.fchp.es
Fundación Lovexair
Fundación Lovexair

Fundación Lovexair

Lovexair Foundation, Spain

Lovexair is a not-for-profit Foundation established in 2011, Spain, in a European framework with global outreach.

Our aim is to improve peoples' quality of life, health outcomes and wellbeing where they are impacted by respiratory issues: rare, prevalent and acquired.

At Lovexair we are aware of the difficulties that a person with a persistent cough can have, so we have created a space to help you in the first steps, find support and solutions. In addition to accompanying you in your care plan from our HappyAirCommunity.


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.lovexair.com
Global Allergy & Airways Patient Platform (GAAPP)
Global Allergy & Airways Patient Platform (GAAPP)

Global Allergy & Airways Patient Platform (GAAPP)

Our mission is to globally support and empower patients with allergies, airways and atopic diseases by protecting their rights and insisting on the duties of governments, healthcare professionals and the general public. Our objectives are to establish a global network to empower patients with allergies, airways and atopic diseases and support the worldwide community.


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.gaapp.org
Global Foundation for the Care of Newborn Infants
Global Foundation for the Care of Newborn Infants

Global Foundation for the Care of Newborn Infants

At the Global Foundation for the Care of Newborn Infants (GFCNI), our mission is to advocate for lasting improvements in the care, support, and outcomes for newborns and their families worldwide. We pay special attention to the needs of infants born too soon, too small, or too sick - those requiring hospitalization, specialized medical care, surgeries, medications, and ongoing follow-up beyond infancy. As a global organisation focused on the care of newborns including those affected by respiratory conditions, we aim to ensure the experiences and needs of this vulnerable population are represented in the wider respiratory health community.


Covers:

  • Acute lower respiratory infections
  • Bronchiolitis
  • Bronchopulmonary dysplasia
  • COVID-19

http://www.gfcni.org
Greek Lung Disease Patients Association
Greek Lung Disease Patients Association

Greek Lung Disease Patients Association

The Greek Lung Disease Patients Association (BREATH) is managed exclusively by patients or caregivers. Its purpose is to defend the rights, support and empower patients with all forms of acute or chronic pulmonary diseases and conditions affecting the respiratory system.


Covers:

  • Acute lower respiratory infections
  • Acute respiratory distress syndrome
  • Adult asthma
  • Allergies
  • Alpha-1 antitrypsin deficiency
  • Aspergillosis
  • Asthma
  • Breathlessness
  • Bronchiectasis
  • Childhood asthma
  • COPD
  • Cough
  • COVID-19
  • Cystic fibrosis
  • Graft vs Host Disease
  • 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://breathassociation.gr/