ELF Patient Organisation Network

A strong patient group executive with a medical director forms the key infrastructure to the maintenance phase of CSAN. Improving patient-centered care structures for individuals with asthma remains the focus – and in particular for individuals with severe asthma, the most difficult-to-control 5-10% of asthma patients. This will hopefully lessen the impact of asthma currently within our Canadian health care system (severe asthma accounts for 50-60% cost of asthma).

Covers:

• Asthma

Czech Civil Association Against Lung Diseases (COPN)

• Founded in 1999 as Czech Civic Association Against COPD following the GOLD Initiative
• Czech national lung patients´ organisation
• Members: patients with chronic pulmonary diseases and pneumologists
• Specialised local clubs for patients with identic dg.: COPD, asthma, interstitial lung diseases (ILD), sarcoidosis, lung carcinoma, sleep disorders, post-transplant patients
• Aims: information and education for both specialists and the public about news in diagnostics and treatment of lung diseases
• Participation in World COPD Day including press conference, broad information campaign (radio, TV, press)
• Countrywide spirometry testing for members of the public each year
• Traditional conference on COPD every November in Prague for patients and health care workers
• Participation in patients´ organisation activities on both national (including Ministry of Health) and international level (ELF – Patient Advisory Committee, EFA, COPD Global, GAAPP).
• Czech Pneumological and Phthisiological Society is the professional guarantor of ČOPN activities.

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

Covers:

• ChILD

Covers:

• Pulmonary Hypertension

Covers:

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

ConectAR is a community of people with respiratory diseases, their carers and interested citizens, researchers and health professionals, who are interested in co-creating solutions with a potential impact on health that can improve its quality through research and development processes.

Covers:

• Acute lower respiratory infections
• Acute respiratory distress syndrome
• Adult asthma
• Allergies
• Alpha-1 antitrypsin deficiency
• Aspergillosis
• Asthma
• Breathlessness
• Bronchiectasis
• ChILD
• Childhood asthma
• COPD
• Cough
• COVID-19
• Cystic fibrosis
• Graft vs Host Disease
• 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

COPD Germany

Covers:

• COPD

Cystic Fibrosis Australia (CFA) is the peak patient body in Australia and our remit is to support the broad cystic fibrosis (CF) community through Advocacy, Research and Clinical Improvement.

CFA is committed to improving clinical practice and patient outcomes with the aim of extending life expectancy from 47 to 55 years by 2025. CFA is the subject matter expert for government, industry and the media.

CFA also supports state and territory CF bodies who provide valuable services to the CF community.

Covers:

• Cystic fibrosis

CFE is striving for a longer and better life for people with cystic fibrosis. CFE envisages a future where a final cure is found and access is given to all persons with Cystic Fibrosis. By supporting national patient organisations and building expertise and advocacy capacity for European policy, research and care, we will drive up standards for everyone living with CF in Europe.

Covers:

• Cystic fibrosis

German Respiratory League

The German Respiratory League is committed to providing the best possible care for patients with respiratory and lung diseases. To this end, we inform the public through regular media activities, including social media such as Facebook, Twitter, Instagram and YouTube. For physicians in practices and clinics, we provide recommendations and guidelines written by experts on the diagnosis and treatment of respiratory and pulmonary diseases. For patients and family members, we keep a wide range of information available. The Respiratory League is a valuable resource for those seeking quality-assured information on prevention, diagnosis, therapy and rehabilitation of lung 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

Sarcoidosis Germany

Covers:

• Sarcoidosis

Estonian Lung Association

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

Our vision is improved health, and quality of life, for patients born with esophageal atresia. We will achieve this through collaboration between patients, their families, international patient support groups and medical professionals to promote and support best-practice health care. We speak in a unified global voice, advocating on behalf of patients and their families affected by esophageal atresia.

Covers:

• Other lung diseases
• Rare and orphan lung disease

The European Federation of Allergy and Airways Diseases Patients' Associations (EFA) is the voice of the 200 million people living with allergy, asthma and chronic obstructive pulmonary disease (COPD) in Europe. We bring together 39 national associations from 24 countries and channel their knowledge and demands to the European institutions. We connect European stakeholders to ignite change and bridge the policy gaps on allergy and airways diseases so that patients live uncompromised lives, have the right and access to the best quality care and a safe environment.

All EUFOREA activities are directly related to reducing the prevalence and burden of allergies and airway diseases with a focus on digital solutions related to the three pillars of EUFOREA - Research, Education & Advocacy

Covers:

• Acute lower respiratory infections
• Acute respiratory distress syndrome
• Allergies
• Asthma
• COVID-19
• Sleep apnoea
• Sleep disordered breathing
• Upper airways diseases

Established in 2016, the European Pulmonary Fibrosis Federation (EU-PFF) is a Belgium Registered not-for-profit umbrella organisation for Pulmonary Fibrosis patient organisations in Europe. Together with our member organisations and partners , we work to raise awareness of Pulmonary Fibrosis on a political and public level, in healthcare and policy, treatment and research, and with a focus on differences and similarities from country to country across these areas.

To this end, we collaborate closely with medical experts and researchers across Europe and the world aiming to put a spotlight on this disease, its diagnostic pathway and existing treatment. We monitor and contribute to research and the potential development of new treatment modalities. We contribute to scientific articles, surveys and reports and are a established and trusted patient involvement partner. We provide trusted information and webinars in collaboration with our healthcare partners to provide updates on all aspects of the disease for our members and the PF Community. We have also organised the first ever held in Europe PF Patient Summits.

We raise awareness of Pulmonary Fibrosis through our annual awareness campaign each September. We strongly collaborate with other organisations around the world to exchange best practices, outreach to healthcare authorities and to provide education on Pulmonary Fibrosis.

Covers:

• Idiopathic pulmonary fibrosis
• Pulmonary Fibrosis

PHA Europe is the umbrella organisation for national associations of patients living with pulmonary hypertension (PH) in Europe. It was founded in Vienna, Austria, in 2003 and is registered as an international non-profit organisation.

Our main aims are the following:

• improve access to expert care
• improve awareness and screening
• encourage clinical research and innovation
• empower patient groups
• ensure the availability of psychosocial support

Covers:

• Pulmonary Hypertension

Fairlife- Lung Cancer Care is the first non-profit organization in Greece dedicated to lung cancer the leading cause of deaths from cancer in our country and worldwide.
FairLife L.C.C. was created in memory of Simon Bell who lost the battle with lung cancer in August 2020.

FairLife Lung Cancer Care aspires to support and represent all lung cancer patients in Greece, as well as their families and caregivers.

We are a group of people with the common vision to beat lung cancer by raising public awareness regarding early detection. We are determined to help patients have access to effective treatment, clinical trials and offer them improved quality of life, for as long as possible.

Our goal is supported by lung cancer scientific experts, from Greece and abroad, with the assistance of volunteers, patients, and caregivers.

Covers:

• Lung cancer