ELF Patient Organisation Network

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

Spanish Federation of Allergy and Airways Diseases Patients’ Associations (FENAER)

FENAER works for the defence of the rights of respiratory patients, the improvement of the care they receive and the awareness of the public and health administrations on the impact of these 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

Federasma and Allergy Patient Federation, Italy

We support patients to recognise and manage the illnesses listed below through campaigns and initiatives. We are in touch with all institutional fields to develop laws and conditions that will help patients.

Covers:

• Acute lower respiratory infections
• Allergies
• Asthma
• Bronchiectasis
• Childhood asthma
• COPD
• COVID-19
• Occupational lung disease
• Pneumonia
• Sleep apnoea

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

The Greek Lung Disease Patients Association (BREATH) is managed exclusively by patients or caregivers. Its purpose is to defend the rights, support and empower patients with all forms of acute or chronic pulmonary diseases and conditions affecting the respiratory system.

Covers:

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

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 Community of Pulmonary Hypertension started its work at the end of 2012 by people living with pulmonary hypertension and their caregivers. Their main goal is to recognise and overcome the issues around pulmonary hypertension.

Covers:

• Lung transplantation
• Pulmonary Hypertension

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