ELF Patient Organisation Network

The Canadian Pulmonary Fibrosis Foundation (CPFF) is a registered Canadian charity established to provide hope and support for people affected by pulmonary fibrosis (PF). Our charitable registration # is 850554858RR0001. We work closely with patients and caregivers, medical experts, and governments. With the support of dedicated volunteers, staff and our sponsors and donors, we aim to achieve our mission and vision.

Covers:

• Pulmonary Fibrosis

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 Civic Association Against Lung Diseases (Český občanský spolek proti plicním nemocem, ČOPN) is a Czech patient organisation that brings together people living with lung diseases, their families and respiratory specialists. The organisation works to improve awareness of lung diseases, support patients with reliable information and strengthen collaboration between patients and healthcare professionals.

Covers:

• COPD

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

The COPD Foundation’s mission is to help millions of people live longer and healthier lives by advancing research, advocacy, and awareness to stop COPD, bronchiectasis, and NTM lung disease.

Covers:

• Bronchiectasis
• 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

European Cancer Patient Coalition (ECPC) is the voice of cancer patients in Europe. With over 450 members, ECPC is Europe’s largest umbrella cancer patients’ association, covering all 27 EU member states and many other European and non-European countries. ECPC represents patients affected by all types of cancers, from the rarest to the most common.

Covers:

• Lung cancer

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.