ELF Patient Organisation network

Austrian Lung Union (ÖLU)

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

Patient organisation Pulmonary Emphysema – COPD Germany

Covers:

• COPD

Lung Transplant Patient Association, Belgium

Covers:

• Lung transplantation

PRT organises lectures, campaigns and courses on various topics in the field of health. PRT is also a contact point for all citizens who have questions about health issues, living wills and patients' rights. We have made it our business to answer your questions about "patients' rights" and "patient wills" as best we can.

Covers:

• Sarcoidosis

We are PCD Support UK. We're here for those affected by PCD, we talk about PCD as widely as possible and we champion research to improve its diagnosis, management.

Primary Ciliary Dyskinesia (PCD) is a rare, genetic disease affecting around 1 in 15,000 people in the UK. It is caused by abnormal motile cilia (motile cilia are the microscopic hairs that beat in the airways, sweeping secretions out of the respiratory tract). PCD can affect the lungs, nose, sinuses, ears and fertility.

Covers:

• Primary Ciliary Dyskinesia (PCD)

The purpose of the Federation is to represent the interests of people suffering from asthma, allergic diseases and chronic obstructive pulmonary diseases, defending their rights and freedoms, coordinating activities in this area and creating conditions for the full and active participation of people suffering from asthma, allergic diseases and COPD in social life.

Covers:

• Acute lower respiratory infections
• Adult asthma
• Allergies
• Alpha-1 antitrypsin deficiency
• Asthma
• COPD
• COVID-19
• Cystic fibrosis
• Lung cancer
• Occupational lung disease
• Pneumonia
• Pulmonary arterial hypertension
• Pulmonary Fibrosis
• Pulmonary Hypertension
• Sarcoidosis
• Sleep apnoea
• Sleep disordered breathing
• Smoking cessation
• Tuberculosis
• Upper airways diseases

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

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

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