ELF Patient Organisation network

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

Association of Asthma and Allergy Patients "Aire Libre" of Granada, Spain

Aire Libre is a not-for-profit organisation of mutual support, with the primary purpose to promote all kinds of actions and care, health and scientific activities dedicated to improving the quality of life of all people affected by respiratory problems.

Covers:

• Allergies
• Asthma

Association of Relatives and Patients with IPF (AFEFPI)

AFEFPI is a national association made up of relatives and patients with idiopathic pulmonary fibrosis (IPF) and Familial Pulmonary Fibrosis (FPF) (cases of IPF that are grouped in families, that is to say, two or more cases in the same family).

The association was created in 2008 in order to join the efforts of all those who in one way or another are interested in the disease (doctors, patients, relatives) who want to collaborate and support those affected by this disease.

Covers:

• Idiopathic pulmonary fibrosis

Spanish patient organisation of COPD (APEPOC)

APEPOC is a non-profit organisation that is included in those regulated by articles 16 and 2 of Law 49/2002, of December 23, 2002, on the tax regime of non-profit organisations and tax incentives for patronage, with its own legal personality, which pursues general interest purposes, and whose objectives, among others, the defense of the rights of COPD patients. All the actions carried out by this association will ultimately aim to improve the quality of life of COPD patients. In order to achieve this objective, it mainly uses two ways: the assistance services to its associates, and the dissemination of the disease as a means to pressure the administrations to invest in quality of life for COPD patients.

Covers:

• COPD

Spanish Association of Lung Cancer Patients (AEACaP)

Covers:

• Lung cancer

National Association of Pulmonary Hypertension of Spain (ANHP)

MISSION: Work to improve the quality of life of people with Pulmonary Hypertension and disseminate knowledge of it to the entire society

VISION: To be a reference at a national and international level for families with Pulmonary Hypertension and for entities related to this disease

Covers:

• Pulmonary Hypertension

The Aspergillosis Trust is a patient led patient advocacy group and we aim to support sufferers worldwide with all forms of Aspergillosis and to help them understand the disease and its treatments. The purpose of the Aspergillosis Trust is to promote and raise awareness of Aspergillosis in all its forms and to increase the understanding of the condition amongst both the Medical professionals and the public at large.

Covers:

• Aspergillosis

Portugal´s Alpha 1 Association (AA1P)

The main goals of AA1P are to:

1. Contribute to increase the quality of life of the Alpha´s patients
2. Disseminate information about Alpha1 to civil society and health professionals.
3. Promote the importance of diagnosis

Covers:

• Alpha-1 antitrypsin deficiency

Brazilian Pulmonary Hypertension and Related Diseases Association (ABRAF)

ABRAF is a Brazilian registered nonprofit organization for chronic lung and heart illnesses patients with no political or religious affiliations since 2006. Its mission is to improve patients' quality of life, supporting them and their families, raising awareness of their disease, collaborating with healthcare providers, and promoting public policies for adequate, accessible treatment.

Based in São Paulo, ABRAF reaches Latin-American and Portuguese-speaking countries. Either in ABRAF’s support groups, helpline, or educational conferences, families receive information on access to social security, treatment, and clinical trials. The community also benefits from researches, awareness campaigns, and advocacy at federal, state, and local levels.

Covers:

• Pulmonary Hypertension

Portuguese Lung Transplant Association (ATPP)

The Associação de Transplantados Pulmonares de Portugal (Portuguese Lung Transplant Association) is a Portuguese non-profit organization that intends to support, defend, enlighten and improve quality of life of lung transplanted patients. It also aims to promote the sharing of experiences and information between the patients and candidates to a lung transplant, as well as to present accurate scientific knowledge regarding this medical process.

Covers:

• Lung transplantation

Association of Chronic Cough

Trying to gather all chronic coughers in France and French speaking countries, to have chronic cough recognized as a real illness by the medical world and State Health Administration.

Covers:

• Cough

Alpha-1 France (ADAAT)

The ADAAT association brings together families suffering from an alpha-1 antitrypsin deficiency. We help patients in their health journey. We work with doctors to improve patient care and we help research.

Covers:

• Alpha-1 antitrypsin deficiency

French Idiopathic Pulmonary Fibrosis Patients and Caregivers Association (APEFPI)

Covers:

• Idiopathic pulmonary fibrosis

Apnoic Italian Association APS

Covers:

• Sleep apnoea

Bronchiectasis Italian Association (AIB)

AIB is an Italian patient association and its mission is "Help to know and handle bronchiectasis".

Covers:

• Bronchiectasis

COPD Patient Association, Italy (Ass BPCO)

The Association aims to increase the knowledge of COPD and its management by patients and their families on the basis of the most recent scientific findings, in order to improve their health conditions and quality of life. It acts as an interlocutor for the institutions, to pursue the implementation of tools, including legislative ones, aimed at improving the protection of the chronic respiratory patient, promoting information, education and prevention campaigns and supporting scientific medical and pharmacological research.

Covers:

• COPD

Asthma + Lung UK will bring lasting benefits to everyone in the UK affected by asthma and other lung diseases. It is a powerful voice for all respiratory diseases for change and to get more, and better, investment in the NHS.

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

Covers:

• Allergies
• Asthma