ELF Patient Organisation Network

PCD Australia Foundation is a registered charity established in 2013 and run by a volunteer committee with support from respiratory specialists across Australia. The organisation works to increase awareness of Primary Ciliary Dyskinesia (PCD) among healthcare professionals and the wider community, helping to improve understanding and recognition of this rare condition.
The Foundation aims to support people living with PCD by promoting access to high‑quality care and improving quality of life for patients and families. It provides information, support services and community activities, advocates for the needs of those affected, raises funds to advance its work, and encourages research to improve diagnosis, treatment and long‑term management of PCD.

Covers:

• Primary Ciliary Dyskinesia (PCD)

PROLONG VZW is an initiative by and for people with lung cancer or lung adenocarcinoma (mesothelioma) and their loved ones, who want to support each other and encourage contact between fellow sufferers by organising various activities. We are active all over Flanders (Belgium).

Covers:

• Lung cancer

Pulmonary Hypertension Society of Latvia

Covers:

• Pulmonary Hypertension

Pulmonary Hypertension vzw

Covers:

• Pulmonary Hypertension

Pulmonary Fibrosis Northern Ireland was set up by Respiratory Consultant Eoin Murtagh Specialist Respiratory Nurse Pat Gorman in 1995. They provide support, guidance, advice, and signposting to sufferers of pulmonary fibrosis and their families from across Northern Ireland. They are working to provide a bespoke respite facility for sufferers and their families.

The PFNI was set up by respiratory consultant Eoin Murtagh and specialist respiratory nurse Pat Gorman in 1995. We provide support, guidance, advice and signposting to sufferers of pulmonary fibrosis and their families from all over Northern Ireland. We have recently become a charity and are working to provide a bespoke respite facility for sufferers and their families. We work with all five health trusts here and also form part of the all party working group on lung health for our nation.

Covers:

• Idiopathic pulmonary fibrosis
• Interstitial lung disease

Our aim is to offer support and comfort for those affected by pulmonary fibrosis.

Covers:

• Pulmonary Fibrosis

From its launch in the year 2000, the PHA UK has now grown to almost 4,500 members. Our community is like no other; a unique group of people committed to supporting each other and raising awareness of this serious condition in the hope of one day, finding a cure.

Covers:

• Pulmonary Hypertension

We are a dedicated organization dedicated to patient support, research and awareness of pulmonary hypertension.

Covers:

• Lung transplantation
• Pulmonary Hypertension

Covers:

• Pulmonary Hypertension

Pulmonary Hypertension Serbia is a voluntary non-governmental organization, non-partisan and non-profit association of individuals and legal entities, established to achieve goals in the field of improvement, protection, education, and rights of patients with pulmonary hypertension.

Since 2015, it has been a member of the national patient association PH Europe, based in Vienna, which includes more than 40 European countries, including Austria, Belgium, Bosnia and Herzegovina, Bulgaria, Italy, Ireland, Israel, Germany, France, Denmark, Portugal, Macedonia, Hungary, Croatia, Lithuania, Czech Republic, Sweden, Switzerland, Ukraine, Turkey, etc.

PH Serbia, together with PH Europe, works collaboratively to raise awareness about PH throughout Serbia and Europe, promote optimal standards of care for people living with this condition, ensure the availability of all approved treatments, and encourage research for new drugs and therapies.

Covers:

• Pulmonary Hypertension

Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc), Turkey

Non-profit patient organisation for rare diseases related to pulmonary hypertension in Turkey.

Covers:

• Pulmonary Hypertension

Portuguese Association of people with COPD and other chronic respiratory diseases (Respira)

Vision: 
To be a National Association of reference in the area of Chronic Respiratory Diseases.

Mission: 
To contribute to the prevention and treatment of respiratory diseases and to be a pillar in the defence of the interests and rights of persons with COPD and other chronic respiratory diseases.

Covers:

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

Vision: Healthy lungs and clean air for all.
Mission: To improve the respiratory health and well-being of Ghanaians and mankind especially, the lives of vulnerable children, youth and the elderly in deprived communities and mining areas through education, clinical care and research, human resource development and support of national and international public health activities in respiratory diseases and allergy.

Our approach:

The Respiratory Diseases and Allergy Foundation (RDAF) will commence with a particular focus on:

• Education - How to keep your lungs healthy and understanding the symptoms of lung diseases.
• Awareness - Observe lung health month "November" in conjunction with lung health campaigns.
• Advocacy - Ensure lung health is a national priority. Focusing on early detection of lung disease (including lung cancer) and addressing inequalities.
• Information - Publish information about all aspects of lung health and all lung diseases including lung cancer.
• Research - Promote quality research in to lung health, including the prevention, detection and treatment of lung disorders.

Aims/objectives:

• To promote continuing education about lung health, associated life style issues and matters connected to respiratory diseases through awareness creation.
• To give opportunity to health care professionals (students, nurses, doctors, public health workers etc) to acquire skills and knowledge in respiratory health through internship programs.
• To promote equitable access to evidence based care for respiratory diseases.
• To co-operate with other agencies helping people with health issues and promoting research, detection and treatment.
• To undertake publication of information about respiratory disease, cancers, treatment and support.
• To promote early diagnosis of lung diseases and recommend methods of treatment.
• To promote facilities for treatment of respiratory diseases and associated health issues and to support individuals suffering from respiratory diseases.
• To develop support groups of volunteers, medical specialists and medical teams to assist in advising and promoting favourable outcomes in lung health needs and education and fulfilment of the purpose of the Foundation.
• To promote quality research into lung health, supporting research centres, hospitals, and facilities researching prevention, detection and treatment of lung disorders

Covers:

• Acute lower respiratory infections
• Acute respiratory distress syndrome
• Allergies
• Alpha-1 antitrypsin deficiency
• Asthma
• Bronchiectasis
• COPD
• COVID-19
• Non-tuberculosis mycobacteria
• Pneumonia
• Pulmonary embolism
• Sleep apnoea
• Sleep disordered breathing
• Smoking cessation
• Upper airways diseases

Respiriamo Insieme is a non-profit organisation in Italy that works toward making sure that patients with breathing, immunological and allergic pathologies can find the right cure. Reducing the weight of the disease for the patients, their families, and caregivers; we aim to do this through advocacy, education, support, and research.

Covers:

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

Swedish Heart and Lung Association

The Swedish Heart and Lung Association is a Non-Governmental Organisation that unites people with cardiovascular and lung diseases. Our most important objective is to improve living conditions for people with cardiovascular and lung diseases. We are a politically and religiously independent association; founded in 1939 and have been governed by its members ever since. Our president is Ms Inger Ros. We have around 37 000 members in our national association. In order to communicate with its members, a periodical publication named Status is distributed nationwide.

Covers:

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

Roy Castle Lung Cancer Foundation is the charity that gives help and hope to people affected by lung cancer in the UK. The charity aims to support people living with lung cancer and save lives.

Covers:

• Lung cancer

Icelandic Lung Association

The organisation of lung patients was founded on 20 May 1997. Such an organisation was necessary because people suffering from lung diseases had no platform for their issues. The main goal of the organisation is to work on welfare and interest issues of lung patients by e.g. keeping up active social activities, encouraging information and research on the diseases and consequences, and focusing on prevention issues, counselling and information on the rights of the patients.

Covers:

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