ELF Patient Organisation Network

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

www.sarcoidose.nl

Covers:

• Sarcoidosis

SarcoidosisUK is a small charity that exists to provide support and information for people with sarcoidosis, and fund research into a cure for the condition. SarcoidosisUK is dedicated to funding at least one major piece of research per year, and will continue to do this until a cure is found.

Covers:

• Sarcoidosis

Covers:

• Sarcoidosis
• Smoking cessation

Swiss Sarcoidosis Association (SSARV – AscS)

www.sarkoidose.ch

www.sarcoidose.ch

Covers:

• Sarcoidosis

SASA exists to:

• increase public and professional awareness and understanding of Sleep Apnoea;
• promote research and the dissemination of the results; and
• provide support for Sleep Apnoea sufferers and their families.

Covers:

• Sleep apnoea

Covers:

• Adult asthma
• Allergies
• Asthma
• Bronchiectasis

Covers:

• Sleep apnoea
• Sleep disordered breathing

We work to improve the lives of sleep apnoea patients, their partners and their families. Founded in 1996 and funded by patients, SATA is a patient support charity run mainly by patient volunteers. As we are completely independent, we are the "Patients Voice". SATA achieves its goals through education, advocacy, raising awareness and assisting research and development.

Covers:

• Sleep apnoea

Voluntary organisation providing information, support and advocacy for people (and their families) suffering from respiratory sleep disorders and sleep disorders in general.

Covers:

• Sleep apnoea

Covers:

• Pulmonary Hypertension

The Spanish Cystic Fibrosis Federation (FEFQ) is an organisation that brings together and represents 15 Cystic Fibrosis associations from all over Spain. The mission is to bring together CF associations to work together to improve the quality of life of people with CF and their families. In addition, FEFQ want CF to be a disease that is known and led by a strongly united federation that represents all the associations and is their main support.

Covers:

• Cystic fibrosis