ELF Patient Organisation Network

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

The Patient Advisory Board at the Amsterdam UMC provides solicited and unsollicited advice to researchers and clinicians.
Representatives are also active within Lung Foundation Netherlands.

Covers:

• Adult asthma
• COPD
• Lung transplantation

Apnoea Association Belgium Flanders (APNEUVL)

Covers:

• Sleep apnoea

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

Covers:

• Alpha-1 antitrypsin deficiency

The Costa Rican Association of Pulmonary Hypertension aims to provide support and education to individuals living with pulmonary hypertension and chronic obstructive pulmonary disease (COPD), asthma, and chronic respiratory illnesses to improve their quality of life and to support and motivate their families and caregivers.

Covers:

• Pulmonary Hypertension

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

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 Lymphangioleiomyomatosis Sufferers

Founded in 2003 AELAM is focused on giving evidence-based information and support to women affected by Linfangioleiomiomatosis and supporting research to find a cure for this very rare disease that only affects women.

Covers:

• Interstitial lung disease
• LAM

Spanish Association of Lung Cancer Patients (AEACaP)

Covers:

• Lung cancer

Asthma and Allergy Spain are a patient-led, non-profit organization representing people affected by asthma and respiratory allergies in Spain. We were founded by regional patient associations with long-standing experience and a shared commitment to advancing respiratory health. We believe that asthma and allergies can no longer be seen only as clinical conditions. They are closely linked to environmental factors (such as climate change, air pollution, and biodiversity), to inequalities in access to care and early diagnosis, and to broader challenges facing public health systems.

Covers:

• Allergies
• Asthma
• Bronchiolitis

The Asociación Nacional de Enfermos de Sarcoidosis (ANES) is passionate about raising awareness of sarcoidosis and improving the quality of life for people living with the condition.

Covers:

• Sarcoidosis

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