ELF Patient Organisation network

French Federation of Associations of respiratory patients (FFAAIR)

The FFAAIR and its 60 associations in all France work to favour the improving of patients’ life quality, to protect their interests, to promote health policies adapted to the need of patients. The FFAAIR is managed by volunteers: patients and sympathisers. This Federation is involved in actions concerning the information and the protection of the patients’ rights in the framework of the recognition of the respiratory diseases. The FFAAIR has elaborated the Charter of the patients who receive the care at home. This Chart determines the rights and responsibilities of home-care personnel and 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

Respiralia Foundation

We are a non-profit organisation dedicated to treating people with cystic fibrosis (CF) in the Balearic Islands. Our mission is to increase the quality of life of these people and make people aware about this disease. Our vision is to become a reference for families with CF in Spain and at an international level.

Covers:

• Cystic fibrosis

Foundation Against Pulmonary Hypertension (FCHP)

We are for psycho-social care, health care and scientific and genetic research. To provide all kinds of help and promote the social and occupational integration of people affected by Pulmonary Hypertension, to provide information, training and guidance to these patients and their families. In addition to the management, promotion and monitoring of research programmes on this pathology and its dissemination to society.

Covers:

• Pulmonary Hypertension

Lovexair Foundation, Spain

Lovexair is a not-for-profit Foundation established in 2011, Spain, in a European framework with global outreach.

Our aim is to improve peoples' quality of life, health outcomes and wellbeing where they are impacted by respiratory issues: rare, prevalent and acquired.

At Lovexair we are aware of the difficulties that a person with a persistent cough can have, so we have created a space to help you in the first steps, find support and solutions. In addition to accompanying you in your care plan from our HappyAirCommunity.

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 mission is to globally support and empower patients with allergies, airways and atopic diseases by protecting their rights and insisting on the duties of governments, healthcare professionals and the general public. Our objectives are to establish a global network to empower patients with allergies, airways and atopic diseases and support the worldwide community.

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

Italian Group for Study and Therapy of Mesothelioma (G.I.Me)

We provide clinical support and information to patients with thoracic neoplastic diseases with particular interest in mesothelioma. Other main tasks include running independent research to find new unbiased avenues for treating these diseases.

Covers:

• Lung cancer
• Mesothelioma

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

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

Breathing Association, Hungary

Covers:

• COVID-19
• Lung cancer
• Smoking cessation