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Cardiovascular Diseases C14




SAFE, Stroke Alliance for Europe


was founded is 2004, following the recommendations of a strategic workshop in the European Parliament, which gathered a panel of internationally recognized researchers, medical experts, European health-policymakers, and patient groups. A key goal set out in the 10-point action plan produced by the workshop was the set up a European Patient Group for Stroke Prevention. It aims to carry on the work initiated in the 2003 Strategic Workshop, to help muster the political will to act on these 10 key points to prevent stroke-related death and disability throughout Europe. >>more

Hemic and Lymphatic Diseases C15




EHC, European Haemophilia Consortium


is an umbrella organisation of 43 haemophilia patient organisations in Europe. It operates as the European regional office of the WFH (World Federation of Hemophilia), working closely with the WFH team in Canada. A WFH representative egularly joins EHC meetings. EHC's role is to: ensure the best treatment and care for people with haemophilia in Europe,... >>more

Congenital, Hereditary, and Neonatal Diseases and Abnormalities C16




European Chromosome 11Q Network


Objectives: Our network exists of circa 80 families with children with anomalies on the long arm of chromosome 11, 11q. We are looking for other parents/caretakers in Europe and other parts of the world to: (i) make it possible that parents contact each other, (ii) collect as much information as possible about these rare anomalies, (iii) to follow the latest scientific developments. >>more

Euro-Ataxia, European Federation of Hereditary Ataxias


was founded in 1989 at the initiative of Dr Susan Chamberlain from the UK. Its objectives are: - keeping up with and supporting medical research on hereditary ataxias; - central processing of information on such research and passing it on to the members of Euro-Ataxia; - promoting and improving contacts between practitioners concerned with hereditary ataxias and persons affected by any hereditary ataxia,... >>more

OIFE - Osteogenesis Imperfecta Federation Europe


Founded in 1993. Aims: To represent the interests of its members at a European level To collect, publish and exchange information on Osteogenesis Imperfecta (OI) To represent the problems with OI to national or supranational organisations with the intention that they may be recognised and their treatment facilitated in programmes of public health,... >>more

European Huntington's Disease Association, IHA


is mentioned (located at Paddestoelweg 156, NL - 2403 HD Alphen a/d Rijn, contact name Dr Cornelius Varkevisser) but there is no website one can easily find or reach. IHA is a federation of national voluntary health agencies that share common concern for individuals with Huntington's Disease (HD) and their families. Each agency promotes lay and professional education; individual and family support,... >>more

Skin and Connective Tissue Diseases C17




EUROPSO, European Federation of Psoriasis Associations


was founded in 1988 and is a federation of psoriasis patient associations based in Europe. We aim to: a. Strive for social and economic integration of psoriasis patients in Europe by dispelling prejudices, and all other forms of discrimination against psoriasis sufferers. b. Foster and improve treatment of psoriasis, and stimulate research into the causes and consequences of psoriasis,... >>more

DebRA Europe, Dystrophic Epidermolysis Bullosa Research Association - Europe


was founded in 1992 on the initiative of the French and UK national EB (epidermolysis bullosa) support groups. DebRa International is an emanation of DebRA Europe, founded in 1995 to create a platform for communication and co-ordination between EB support groups worldwide. An International Medical and Scientific Advisory Panel was established in 1999 to co-ordinate the research efforts of member groups. >>more

ELEF, European Lupus Erythematosus Federation


was founded in 1989 by national organisations of Lupus Groups from 8 European countries. Aims of ELEF: To collect information on all aspects of Lupus, both in the medical and sociological areas of the disease. To assist in improving the knowledge of the disease for people with Lupus and members of the health, welfare and medical professions,... >>more

The European Federation of Associations of Burned Persons, EFAB


was founded in 2003 in the perspective of harmonising the best legal, psychosocial, medical and prevention practices throughout the Western European countries. >>more

Endocrine System Diseases C19




IDF-Europe, International Diabetes Federation - European Region


Objectives: Founded in 1950, IDF has the mission to promote diabetes care, prevention and a cure worldwide. IDF-Europe is one regional delegation of IDF. The objectives are: - to improve the life of people living with diabetes - to increase awareness of diabetes at all levels - to prevent diabetes and its complications (primary and secondary prevention ) - to promote the development of the member associations. >>more

Immune System Diseases C20




The International Patient Organization for Patients with Primary Immunodeficiencies, IPOPI


was founded in 1990 by 20 patient representatives from 13 countries gathered for the first international conference of national patient organizations for primary immunodeficiency diseases at Kebie College, Oxford, England, and registred in 1992 in the UK. >>more


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