ELF Patient Organisation network

Hellenic Cystic Fibrosis Association (H.C.F.A.) established in 1983 and based in Athens in order to protect and provide care for patients suffering from Cystic Fibrosis (CF), a serious inherited disease that mainly affects the lungs with a very low life expectancy. HCFA represents 800 CF patients all over Greece and is a founding member of Greek Patients Association and representative of Greece in the international organizations Cystic Fibrosis Europe, Cystic Fibrosis Worldwide, Eurordis, ERS, ELF, ESOT-European Transplant Patient Organizations. During its 39 years history, HCFA has managed to change the map of Cystic Fibrosis in Greece, bringing together CF patients all over Greece and medical professionals, improving the quality of life for patients, promoting high quality research, education and care and raising public awareness. In 2020 HCFA managed to ensure early access to the revolutionary triple combination therapy, saving the lives of Greek patients in critical condition and launched the organ donation and lung transplantations campaign “Unlimited Breath – Be a Life Donor”. HCFA continues its work dynamically aiming  to ensure “Unlimited Breath” to CF patients all over Greece.

Covers:

• Cystic fibrosis

The Organisation for Respiratory Health in Finland

The mission of the Organisation is to promote respiratory health and a good life for the respiratory disorder to make it easier for all of us to breathe.

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

Pulmonary Hypertension Spain Patient Organisation (HPE)

HPE-ORG is a non-profit organisation that starts from an unmet need in our condition as affected people, induced by the paradigm shift that is occurring in the health system, where the patient takes a more active and responsible role in the management of their disease, in which the health professional integrates this change, moving from treating a disease to treating a person, visualising and recognising the importance of the caregiver / family member in improving patient care and support.

The objectives of the Association are to promote the health of all people diagnosed with pulmonary arterial hypertension (PAH) and their families, to improve their quality of life in all aspects, promoting their care, employment and social level.

Our Values:
Commitment, transparency, support, solidarity, collaboration, accompaniment, awareness.

Our Mission:
The empowerment of people affected by PH in an integral way, emphasising the three levels of bio-psycho-social health of those affected by PAH and their families.

The main aim is to promote the health of those affected by PH and their families.

Promote a more active and empowered patient in collaboration with health professionals in order to add years to life with quality, while the cure is achieved.

Covers:

• Pulmonary Hypertension

Support Group for people diagnosed with long-term respiratory conditions.

Covers:

• Allergies
• Asthma
• Bronchiectasis
• COPD
• COVID-19
• Idiopathic pulmonary fibrosis
• Interstitial lung disease
• Lung surgery
• Pneumonia
• Pulmonary Hypertension
• Sleep apnoea

We are a community determined to help anyone affected by cancer in Ireland. We are dedicated to preventing cancer, detecting it early and fighting it at every level. We listen to patients and their loved ones and we support them by providing free information and care. We fund cancer research to find better treatments that will save more lives. We work to keep cancer on the Government’s agenda, to make sure the Irish healthcare system functions as well as possible to help cancer patients and their loved ones through their diagnosis.

Covers:

• Lung cancer

The Irish Vascultis Organisation was founded in 2019 in Ireland. We are a voluntary group who provide information advice and support to those with vasculitis their carers and their families. We advocate for better care and services and take a proactive approach in the educating healthcare professionals of this rare systemic condition.

Covers:

• Pulmonary vascular disease

The JHMRF was founded to promote high quality research in mesothelioma to improve treatment and outcomes for patients.

Covers:

• Lung cancer
• Mesothelioma

LAM Academy Sweden

LAM Academy supports LAM patients and their relatives by organising meetings and connecting to other support groups.

Covers:

• LAM

LAM Action is the UK charity for those with LAM. Its aims are to provide information and emotional support for those with LAM and to advance research into LAM

Covers:

• LAM

Our main aim to raise awareness of Lam in Ireland and let women in Ireland know there is support out there for them.

Covers:

• LAM

Breathing Association, Hungary

Covers:

• COVID-19
• Lung cancer
• Smoking cessation

Covers:

• Tuberculosis

Lung Foundation Netherlands

Lung Foundation Netherlands (Longfonds) is the leading not-for-profit lung health organisation and patients’ association in the Netherlands. We are the biggest private financier of lung research in Europe and have been funding major scientific research designed to generate vital knowledge about chronic lung diseases for over six decades. Longfonds campaigns to improve the quality of care and supports patients. As part of the organisation’s effort to improve lung health, Longfonds actively advocates policies that promote clean air.

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

Lung Cancer Europe (LuCE) is the voice of lung cancer patients, their families and survivors at a European level. LuCE provides a European platform for already existing lung cancer patient advocacy groups and supports the establishment of national lung cancer patient groups in different European countries where such groups do not yet exist. LuCE aims to raise awareness about inequities regarding the access to lung cancer treatment and care in Europe. Moreover, it advocates European policies that will lead to improvements in lung cancer prevention, early detection, treatment and care.

Covers:

• Lung cancer

Lung Foundation Australia is the nation’s leading and trusted lung health charity. We fund life-saving research, advocate for increased government support and deliver programs and services that transform the lives of those impacted by lung disease and lung cancer, giving hope in every breath.

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

Lung Fibrosis Forum Austria

Covers:

• Pulmonary Fibrosis

Swiss Lung Association

The Swiss Lung Association provides care and advice for people with lung and respiratory diseases so that they can live as symptom-free and independently as possible and achieve a higher quality of life. Well-networked by experts, the Swiss Lung Association represents the concerns of its patients and promotes their self-help. Through prevention, the Lung League works to ensure that fewer people fall ill with lung and 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

The Malta Health Network (MHN) promotes the health-related interests of patients and the wider community by updating itself about international ‘best practices’ and ‘capacity-building’. The MHN achieves this through its regular contacts with local and international health-related Governmental Organisations, Non-Governmental Organisations, ‘Not-for-Profit’ Organisations and Patient Representative Groups. The MHN strives to give patients a voice in health-related for a in Malta, in the EU and internationally. The MHN is independent of the Government of Malta and of any political party or organisation. When the MHN was established in 2007, it represented 20 founder-organisations: today it represents over 30. The MHN is especially active in promoting The European Charter of Patients’ Rights.

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