ELF Patient Organisation network

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

ACTIF Santé, a patient run, support NGO is based in Paris, France with 16 years experience in community management.
Our programmes help empower patients with NTM (non-tuberculous mycobacterial ) infection through information and training.
We develop activities (nutrition, airway clearance, focus groups) and advocacy that respond to the needs of patients and enhance the quality of life for them and their families.
Our association has been approved by the French Ministry of Health to carry out training in the field of health. Our methods of empowerment are based on the recommendations of the World Health Organization.

Covers:

• Non-tuberculosis mycobacteria

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

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

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

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

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

Finnish Allergy and Asthma Federation

Covers:

• Allergies
• Upper airways diseases

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

The Alliance for Pulmonary Hypertension (AfPH) is registered in Brussels (BE) as an international non-profit organisation. It was established in 2020 by the pulmonary hypertension (PH) patient associations of Belgium (HTAP Belgique and Pulmonale Hypertensie vzw), France, Germany, Greece, Latvia and Poland, with the Turkish Association PAHSSc joining as a new member in 2022. The AfPH's mission is to promote the sharing of knowledge and expertise about PH across the community and engage in collaborative activities to address unmet patient needs and help improve access and efficacy of PH care.

Covers:

• COPD
• Lung transplantation
• Pulmonary arterial hypertension
• Pulmonary Hypertension
• Rare and orphan lung disease

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

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

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

Covers:

• Alpha-1 antitrypsin deficiency

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

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

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

Apnoea Association Belgium Flanders (APNEUVL)

Covers:

• Sleep apnoea

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

Covers:

• Alpha-1 antitrypsin deficiency