ELF Patient Organisation network

The Bulgarian Society of Patients with Pulmonary Hypertension (BSPPH) is an organisation that fully understands the challenges faced by pulmonary hypertension (PH) patients and their loved ones. Therefore, we strive to encourage contacts and empathy between PH patients, as well as their adaptation to their changed lifestyle. We aim to improve their mental and physical well-being through forms of personal, organisational and financial support. We also help disseminate scientific information about the disease. Access to innovated therapies. BSPPH is a member of the largest patient association in Bulgaria - National Patients' Organization , which is officially recognised by the Ministry of Health as the only nationally represented patient organisation in the country. BSPPH is a full member of PHA Europe, and EURORDIS. The association also has an excellent cooperation with ELF.

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.

COPD Germany

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.

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.

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.

Sarcoidosis Germany

Estonian Lung Association

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.

The European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) is a non-profit organisation that brings together European national patient associations committed to defending their vision of equal access to treatment and care for all IPF patients, regardless of geography, socio-economic status or age. Our common view has encouraged us to officially establish the first European IPF and other related disorders federation in July 2016.

Our commitment and ambition are grounded in one of our key achievements: the development of the European IPF Charter, which was launched in the European Parliament in September 2014. The Charter lays down the rights of IPF patients and concrete policy recommendations that, if adopted, would ensure improvements in patients’ quality of life whilst supporting efforts to find a cure.

We aim to serve as a trusted resource for the IPF community by raising awareness, providing disease education, advancing care, and supporting research for IPF whilst defending the interests of IPF patients at European level. We fight for equal access to treatment, information and ensuring exchange of information between national patient groups.

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

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.

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.

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.

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.

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.

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.