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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A tot pulmó
A tot pulmó

A tot pulmó

A tot pulmó is a non-profit association of patients, caregivers and professionals interested in respiratory diseases in Spain. Our goal is to support, assist and help those affected by these problems, improving their knowledge about the disease and its treatments.


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.santpau.cat/es/web/public/atotpulmo
Action for Pulmonary Fibrosis (APF), UK
Action for Pulmonary Fibrosis (APF), UK

Action for Pulmonary Fibrosis (APF), UK

Action for Pulmonary Fibrosis (APF) is a growing community of patients, families, researchers and healthcare professionals striving to find a cure for pulmonary fibrosis so that everyone affected by the disease has a better future. We provide personalised support to patients and families – and raise awareness of pulmonary fibrosis through campaigning, fundraising and education. We are also committed to funding research to improve quality of life for people living with pulmonary fibrosis today and tomorrow.


Covers:

  • Pulmonary Fibrosis

www.actionpf.org
Advocacy & Awareness for Immune Disorders Association (AAIDA), USA
Advocacy & Awareness for Immune Disorders Association (AAIDA), USA

Advocacy & Awareness for Immune Disorders Association (AAIDA), USA

AAIDA exists to provide support and advocate for patients living with immune disorders and overlapping conditions, both Nationally and Internationally. AAIDA works to promote research and create better awareness around these disorders.


Covers:

  • Acute lower respiratory infections
  • Allergies
  • Asthma
  • Bronchiectasis
  • Interstitial lung disease
  • Non-tuberculosis mycobacteria
  • Pneumonia
  • Sarcoidosis

www.GoDoAaida.org
aha! Allergiezentrum Schweiz
aha! Allergiezentrum Schweiz

aha! Allergiezentrum Schweiz

aha! Swiss Allergy Centre

aha! Swiss Allergy Centre, a centre of excellence in the areas of allergy, skin, asthma and intolerance, offers information, advice and training courses to sufferers, but also to businesses, training centres, authorities, associations and other groups and it runs prevention and information campaigns.


Covers:

  • Asthma

www.aha.ch
Alianța Națională pentru Boli Rare România (ANBRaRo)
Alianța Națională pentru Boli Rare România (ANBRaRo)

Alianța Națională pentru Boli Rare România (ANBRaRo)

National Alliance for Rare Diseases Romania (ANBRaRo)

The National Alliance for Rare Diseases in Romania was established at the initiative of the Prader Willi Association in Romania in August 2007, through a project funded by CEE Trust. To found the Alliance, 32 founding members have joined forces: rare disease organisations and patient groups for whom the disease is so rare that there is no association.

ANBRaRo's mission is to develop and carry out lobbying and advocacy activities to improve the quality of life of patients with rare diseases in Romania.

Purpose: To increase the responsibility of the community towards patients affected by rare diseases by involving social actors in this field: patients, families, specialists and authorities.

General objective: improving the quality of life of people with rare diseases in Romania.


Covers:

  • Rare and orphan lung disease

www.bolirareromania.ro
ALK Positive Patient Support and Advocacy Group
ALK Positive Patient Support and Advocacy Group

ALK Positive Patient Support and Advocacy Group

We are a patient led charity that provides emotional support and information to ALK-positive patients and families. We also advocate on their behalf with key NHS and decision making bodies to improve the overall survival of ALK-positive patients across the UK


Covers:

  • Lung cancer

www.alkpositive.org.uk
Allergia-, Iho- ja Astmaliitto ry
Allergia-, Iho- ja Astmaliitto ry

Allergia-, Iho- ja Astmaliitto ry

Finnish Allergy and Asthma Federation


Covers:

  • Allergies
  • Upper airways diseases

www.allergia.fi
Allergy & Asthma Organization of Kenya (AAOKENYA)
Allergy & Asthma Organization of Kenya (AAOKENYA)

Allergy & Asthma Organization of Kenya (AAOKENYA)

Allergy & Asthma Organization of Kenya is a registered not-for-profit patient driven organisation in Kenya. It endeavours to create public awareness creation, education, advocacy, testing and research on allergy, asthma, COPD and respiratory conditions.


Covers:

  • Allergies
  • Asthma

www.aaokenya.org
Alpha-1 Foundation Ireland
Alpha-1 Foundation Ireland

Alpha-1 Foundation Ireland

Alpha-1 Foundation Ireland was founded in 2001 and is based in the RCSI Education and Research Centre at Beaumont Hospital. We are dedicated to raising awareness, increasing diagnosis, promoting research, and improving the treatment of Alpha-1. Our vision is that every person with Alpha-1 in Ireland is diagnosed and receives specialist care and treatment in a timely fashion.


Covers:

  • Alpha-1 antitrypsin deficiency

www.alpha1.ie
Alpha-1 Global
Alpha-1 Global

Alpha-1 Global

Our mission is to develop a collaborative global network of Alpha-1 patient leaders, physicians, and researchers, to increase awareness, detection, and access to care for Alphas around the world.


Covers:

  • Alpha-1 antitrypsin deficiency

www.alpha-1global.org
Alpha-1 Plus Belgium asbl
Alpha-1 Plus Belgium asbl

Alpha-1 Plus Belgium asbl

Alpha-1 Plus asbl is a patient driven association for advocacy in Alpha-1 antitrypsin deficiency.


Covers:

  • Alpha-1 antitrypsin deficiency

www.alpha1plus.be
Alpha-1 UK Support Group (A1UK)
Alpha-1 UK Support Group (A1UK)

Alpha-1 UK Support Group (A1UK)

We are the UK's premier charity for patients and families affected by alpha-1 antitrypsin deficiency. We have a 21-year history of providing information, advice and practical and financial support to alpha-1 patients. The Alpha-1 UK Support Group is campaigning to heighten the awareness of alpha-1 and the burden of living with this disease. We work collaboratively with expert clinicians and politicians to effectively communicate the unmet needs of the patient community to policy makers. We design and drive initiatives to improve access to adequate healthcare services and effective treatments for Alpha-1 patients across the UK.


Covers:

  • Alpha-1 antitrypsin deficiency

www.alpha1.org.uk
Alpha1 Deutschland e.V.
Alpha1 Deutschland e.V.

Alpha1 Deutschland e.V.

Alpha1 Germany

Alpha1 Deutschland e. V. was established in 2001 and is one of the largest alpha-1 patient organisations in Europe. We aim to make the everyday lives of affected patients and their relatives easier, provide information about the disease and take away fears. We promote and train regional support groups. Another important goal is to raise awareness of the disease among doctors and researchers as well as the public. For this reason, we organise regular information events for adults and children, to which we invite speakers who have been involved with AAT deficiency for many years.


Covers:

  • Alpha-1 antitrypsin deficiency

www.alpha1-deutschland.org
Amici Contro la Sarcoidosi Italia (ACSI)
Amici Contro la Sarcoidosi Italia (ACSI)

Amici Contro la Sarcoidosi Italia (ACSI)

Friends Against Sarcoidosis Italy (ACSI)

ACSI is the only national Association in Italy dealing with Sarcoidosis, supporting patients, in terms of information and assistance. It supports physicians and researchers in their medical and science activities, by improving knowledge and awareness and supporting research economically.


Covers:

  • Sarcoidosis

www.sarcoidosi.org
ApneuVereniging Vlaanderen vzw (APNEUVL)
ApneuVereniging Vlaanderen vzw (APNEUVL)

ApneuVereniging Vlaanderen vzw (APNEUVL)

Apnoea Association Belgium Flanders (APNEUVL)

Covers:

  • Sleep apnoea

www.ApneuVereniging.be
Asociación Alfa-1 de España (Alfa-1 España)
Asociación Alfa-1 de España (Alfa-1 España)

Asociación Alfa-1 de España (Alfa-1 España)

Spanish Alpha-1 Patients’ Association (Alfa-1 España)

Covers:

  • Alpha-1 antitrypsin deficiency

www.alfa1.org.es
Asociación de apoyo a personas afectadas por el asma de Bizkaia
Asociación de apoyo a personas afectadas por el asma de Bizkaia

Asociación de apoyo a personas afectadas por el asma de Bizkaia

Association of support for people affected by asthma in Bizkaia

 

ABOUT US

We are a non-profit association created to make visible, sensitize, guide, help, educate and inform people affected by Asthma, family, environment and society in general. Inform, help and defend the needs of asthmatic people and their environment.

OUR WORK

Help to cope with Asthma in its different phases and categories. Promote and encourage meetings with professionals, associations or other bodies involved. Raise awareness and make asthma disease visible. Represent the group of people affected by Asthma. Participate in national and international projects and studies related to asthma.


Covers:

  • Asthma

asmabibizkaia.com
Asociación de Apoyo e Información a Familiares y Pacientes con Neumonía (NEUMOAI)
Asociación de Apoyo e Información a Familiares y Pacientes con Neumonía (NEUMOAI)

Asociación de Apoyo e Información a Familiares y Pacientes con Neumonía (NEUMOAI)

Association for the Support of Patients with Pneumonia and their Families (NEUMOAI), Spain

NEUMOAI is a non-profit organisation in Spain that aims give visibility and raise awareness about pneumonia.


Covers:

  • Pneumonia

www.neumoai.org
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