ELF Patient Organisation Network

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

Pulmonary Hypertension Association the Netherlands

Covers:

• Pulmonary Hypertension

Stitching PIBO is a non-profit organisation dedicated to improving the diagnosis and treatment of Post-Infectious Bronchiolitis Obliterans (PIBO), especially in young children. They aim to raise awareness among parents and healthcare professionals, and support scientific research into its causes and consequences.

Covers:

• Interstitial lung disease
• Rare and orphan lung disease

TB Europe Coalition (TBEC) is a regional advocacy network of civil society organisations and individuals in the WHO Europe region committed to end tuberculosis (TB). The network aims to strengthen the role of civil society within the regional response to TB, and ensure political and financial commitments to end TB.

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

The Association for Supporting MDR TB Patients (ASPTMR) started a support group for MDR patients in 2011. Now, they provide direct services for over 4000 TB patients. ASPTMR also advocate for those with TB and contribute to the TB Law in Romania.

Covers:

• Tuberculosis

The BHD Foundation offers a number of creative and useful resources to inform, empower and build up the BHD community, such as interviews with researchers and people affected by BHD, patient advocacy and creating public and patient-friendly information on the condition. It is directed towards families affected by BHD as well as researchers and health professionals.

Covers:

• Rare and orphan lung disease