ELF Patient Organisation Network

The Pulmonary Hypertension Patients Association has been active since 2014. It is a private, NGO association, representative at the national level, independent, apolitical, and non-governmental, which operates in accordance with Romanian legislation in force. The association's goal is to create a strong and informed community for patients with pulmonary hypertension (PH) in Romania. The association's activity is aimed at improving their quality of life through access to accurate information, emotional support, and access to adequate medical resources—early diagnosis and appropriate treatment. We advocate for raising public awareness of PAH, for patient empowerment, and for promoting the interests of patients before medical and legislative authorities.

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

The Severe Asthma Association is an initiative of a group of people affected by this condition. Here you can find information about severe asthma and its various forms, treatments, and clinical updates. Our goal is to provide a platform for people suffering from severe asthma to connect, learn, and share their experiences. Join us and become part of a supportive community dedicated to improving life with severe asthma.

Covers:

• Asthma

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

APELA (Associação Portuguesa de Esclerose Lateral Amiotrófica) is a non-profit organization dedicated to supporting People with ALS, their families, and caregivers. Founded in 1997, APELA provides multidisciplinary services and therapies that aim to enhance quality of life and well-being. Its mission includes raising awareness of ALS, advocating for patients’ rights, and contributing to scientific research. APELA strives to be a national reference in ALS care and knowledge, promoting excellence, collaboration, and compassion, in the neuromuscular disease journey.

Covers:

• Occupational lung disease
• Rare and orphan lung disease
• Sleep disordered breathing
• Upper airways diseases

Covers:

• Acute lower respiratory infections
• Acute respiratory distress syndrome
• Bronchiectasis
• COPD
• Lung surgery
• Lung transplantation
• Pneumonia
• Primary Ciliary Dyskinesia (PCD)
• Rare and orphan lung disease
• Upper airways diseases

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

Association Fibroses Pulmonaires France (AFPF) supports people living with pulmonary fibrosis and related interstitial lung diseases by providing reliable information, peer support and opportunities to connect with other patients and carers. The organisation also raises awareness, promotes patient involvement and supports research to improve understanding and treatment of pulmonary fibrosis.

Covers:

• Pulmonary Fibrosis

AFPF's aim is to create a broad community of patients suffering from Pulmonary Fibrosis and their loved ones. To support , inform, educate them and promote research on PF.

Covers:

• Idiopathic pulmonary fibrosis

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

ALERMA is responsible for informing, training and guiding respiratory patients in Malaga and its province.

Covers:

• Acute lower respiratory infections
• Acute respiratory distress syndrome
• Adult asthma
• Allergies
• Alpha-1 antitrypsin deficiency
• Aspergillosis
• 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

The Association of Patients with Respiratory Failure and Lung Transplantation (APRFLT) is an organisation that fully understands the challenges that lung disease patients face. Therefore, we strive to promote contacts and empathy between patients with lung diseases, as well as their adaptation to a changed lifestyle. We aim to improve their mental and physical well-being through forms of personal, organizational and financial support. We also help spread scientific information about the disease and access to innovative therapies. APRFLT is a full member of the ESOT-ETPO Alliance.

Covers:

• Adult asthma
• Alpha-1 antitrypsin deficiency
• Asthma
• Bronchiectasis
• COPD
• COVID-19
• Cystic fibrosis
• Idiopathic pulmonary fibrosis
• Lung cancer
• Lung surgery
• Lung transplantation
• Pulmonary Hypertension
• Pulmonary vascular disease
• Rare and orphan lung disease
• Sarcoidosis
• Sleep apnoea

Associazione Apnoici Italiani APS (AAI) is an Italian patient organisation that supports people living with obstructive sleep apnoea and other sleep disorders through information, advocacy, education and practical support. The organisation works to raise awareness of sleep disorders, improve access to diagnosis and treatment, and help patients and carers navigate their care journey.

Covers:

• Sleep apnoea
• Sleep disordered breathing

Apnoic Italian Association APS

Covers:

• Sleep apnoea

The AAG is highly specialised: gathering more than 110 patients all affected by severe asthma or EGPA. It's a unique association focused on the pathology of severe asthma. Our main focus is to help emerging the 30,000 potential severe asthma patients throughout Italy. We are a part of the associative network of FederAsma and Allergies ODV, a member of EFA , and participate in the 3TR project.

Covers:

• Asthma

Bronchiectasis Italian Association (AIB)

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

Covers:

• Bronchiectasis