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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Bulgarian Society of Patients with Pulmonary Hypertension (BSPPH)
Bulgarian Society of Patients with Pulmonary Hypertension (BSPPH)

Bulgarian Society of Patients with Pulmonary Hypertension (BSPPH)

The Bulgarian Society of Patients with Pulmonary Hypertension (BSPPH) is an organisation that fully understands the challenges faced by pulmonary hypertension (PH) patients and their loved ones. Therefore, we strive to encourage contacts and empathy between PH patients, as well as their adaptation to their changed lifestyle. We aim to improve their mental and physical well-being through forms of personal, organisational and financial support. We also help disseminate scientific information about the disease. Access to innovated therapies. BSPPH is a member of the largest patient association in Bulgaria - National Patients' Organization , which is officially recognised by the Ministry of Health as the only nationally represented patient organisation in the country. BSPPH is a full member of PHA Europe, and EURORDIS. The association also has an excellent cooperation with ELF.


Covers:

  • Pulmonary Hypertension

www.bspph.net
Český občanský spolek proti plicním nemocem (COPN)
Český občanský spolek proti plicním nemocem (COPN)

Český občanský spolek proti plicním nemocem (COPN)

Czech Civil Association Against Lung Diseases (COPN)
  • Founded in 1999 as Czech Civic Association Against COPD following the GOLD Initiative
  • Czech national lung patients´ organisation
  • Members: patients with chronic pulmonary diseases and pneumologists
  • Specialised local clubs for patients with identic dg.: COPD, asthma, interstitial lung diseases (ILD), sarcoidosis, lung carcinoma, sleep disorders, post-transplant patients
  • Aims: information and education for both specialists and the public about news in diagnostics and treatment of lung diseases
  • Participation in World COPD Day including press conference, broad information campaign (radio, TV, press)
  • Countrywide spirometry testing for members of the public each year
  • Traditional conference on COPD every November in Prague for patients and health care workers
  • Participation in patients´ organisation activities on both national (including Ministry of Health) and international level (ELF – Patient Advisory Committee, EFA, COPD Global, GAAPP).
  • Czech Pneumological and Phthisiological Society is the professional guarantor of ČOPN activities.

Covers:

  • Acute lower respiratory infections
  • Acute respiratory distress syndrome
  • Adult asthma
  • Allergies
  • Alpha-1 antitrypsin deficiency
  • Asthma
  • Bronchiectasis
  • 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.copn.cz
ChILD Lung Foundation, UK
ChILD Lung Foundation, UK

ChILD Lung Foundation, UK


Covers:

  • ChILD

www.childlungfoundation.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
European Cancer Patient Coalition (ECPC)
European Cancer Patient Coalition (ECPC)

European Cancer Patient Coalition (ECPC)

European Cancer Patient Coalition (ECPC) is the voice of cancer patients in Europe. With over 450 members, ECPC is Europe’s largest umbrella cancer patients’ association, covering all 27 EU member states and many other European and non-European countries. ECPC represents patients affected by all types of cancers, from the rarest to the most common.


Covers:

  • Lung cancer

www.ecpc.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 Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF)
European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF)

European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF)

The European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) is a non-profit organisation that brings together European national patient associations committed to defending their vision of equal access to treatment and care for all IPF patients, regardless of geography, socio-economic status or age. Our common view has encouraged us to officially establish the first European IPF and other related disorders federation in July 2016.

Our commitment and ambition are grounded in one of our key achievements: the development of the European IPF Charter, which was launched in the European Parliament in September 2014. The Charter lays down the rights of IPF patients and concrete policy recommendations that, if adopted, would ensure improvements in patients’ quality of life whilst supporting efforts to find a cure.

We aim to serve as a trusted resource for the IPF community by raising awareness, providing disease education, advancing care, and supporting research for IPF whilst defending the interests of IPF patients at European level. We fight for equal access to treatment, information and ensuring exchange of information between national patient groups.


Covers:

  • Idiopathic pulmonary fibrosis

www.eu-ipff.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
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