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Digestive System Diseases C06




EFCCA - European Federation of Crohn's and Ulcerative Colitis Associations


was formally established in 1993 in Strasbourg, its constitution was registered in Belgium in 1996. In 2005, it gathers 22 European National IBD Patient Associations. It aims at: working with and for the EFCCA Member National Associations and others throughout all of Europe - facilitating the exchange of information and the promotion of cross-frontier activities... >>more

AOECS, Association of European Coeliac Societies


founded in 1988,is the umbrella organisation of European Coeliac Societies. Objectives: - AOECS reviews problems of international importance, coordinates international activities and matters of common interest of the members and favours the exchange of information among the members for the benefit of Europeans affected by the coeliac condition or dermatitis herpetiformis... >>more

International federation for Spina Bifida and Hydrocephalus (IF)


is the world-wide umbrella organisation (INGO) for Spina Bifida and Hydrocephalus created in 1979 by national organisations of people with these impairments and their parents. All EU countries are working together in the IF'Europe division. Objectives: IF's mission is to improve the quality of life of people Spina Bifida and/or Hydrocephalus throughout the world. To decrease the prevalence of Spina Bifida and Hydrocephalus by primary prevention. >>more

Respiratory Tract Diseases C08




EFA, European Federation of Allergy and Airways Diseases Patients Associations


is an umbrella organisation founded in 1991, that serves the interest of its' member organisations on a European level and provides a platform for members to exchange best practices and a framework for capacity building. >>more

Cystic Fibrosis Europe, CF-Europe


is part of the international federation, Cystic Fibrosis Worldwide (CFW). CF Europe is the federation of national European CF Associations and a subdivision of 'Cystic Fibrosis Worldwide'. CFE represents persons with CF and their families in Europe. It was founded at the European CF Conference in Belfast in 2003. So far 25 national CF Associations are member of CF Europe. Objectives: ... >>more

Nervous System Diseases C10




EMSP's, European Multiple Sclerosis Platform


mission is (i) to exchange and disseminate information relating to multiple sclerosis considering all issues relevant to people affected by MS; (ii)to encourage research of all kinds that is appropriate to multiple sclerosis through recognised medical and other organisations,... >>more

ENRAH, the European Network for Research on Alternating Hemiplegia in Childhood


is a network set up as a partnership of patient organisations, academia and industry to support the research on Alternating Hemiplegia of Childhood (AHC).Enrah was founded in Austria in 2003 by Dr. Tsveta Schyns, who is a biologist, but also a concerned mother. Enrah is able to work now it has its first project 'ENRAH for SMEs'(a SSA project funded for two years, 2005-2007, by EC, FP6) which aims at... >>more

European Federation of Neurological Associations (EFNA)


has been launched in October 2001, and brings together European umbrella organisations of neurological patient advocacy groups, to work with other associations in the field of neurology, including the European Federation of Neurological Societies (EFNS), in what has been termed a 'Partnership for Progress'. >>more

The International Bureau of Epilepsy, IBE-European Committee


Objectives of the IBE-European Committee: a. to promote actively the improvement of the quality of life for people with epilepsy; b. to campaign for equal opportunities for people with epilepsy; c. to assist countries where there are no IBE Chapters yet in the setting up of chapters in Europe. To achieve these objectives, the IBE-European Committee shall: a. organise co-operation between the European members of IBE,... >>more

EPDA - European Parkinson's Disease Association


Objectives : - Investigate the prevalence and incidence of Parkinsonís disease in different regions of Europe, the level of disability and quality of life of people with Parkinsonís in Europe - provide and continually update data about medical and caring best practice - make this information readily available to Parkinsonís Disease Associations, groups of people with Parkinson's, carers, professionals and other interested groups... >>more

AE - Alzheimer Europe


Created in 1990 as a network of Alzheimer and dementia associations, Alzheimer Europe counts in 2005 31 organisations from 26 countries. The association has five priority goals: 1.Ensuring people with dementia and their carers are referred to Alzheimer associations when receiving a diagnosis. No diagnosis of Alzheimer's disease should be disclosed without the address of an Alzheimer or dementia association. 2. Promoting the autonomy of people with dementia... >>more

PSP-Europe, European Progressive Supranuclear Palsy Association


Objectives: To promote and sponsor research worldwide into the cause, effective treatment and eventual cure of PSP - To provide information and support for families afflicted by this disease across Europe. - To engender awareness, particularly amongst relevant medical professionals, of PSP and of the Association, mainly within the UK,... >>more

EPN, European Pain Network


is a group of patients' organisations from across Europe founded in December 2004. To combat the inequality in the treatment of pain across Europe, national patients' representatives have combined to provide a strong voice for the chronic pain community. >>more

European Dyslexia Association, EDA


is an international voluntary organisation for people with specific learning disabilities. Founded in 1987, as a non-governmental organisation EDA has consultative status with the European Community and the Council of Europe besides the International Federation of Library Associations and Institutions (IFLA). It is a member of the European Disability Forum. >>more

European Dystonia Federation


Objectives are: Dystonia advocacy, to raise awarness on distonia at the Eupean Level, to improve the health care of people living with dystonia, and the action of the national patient organisations which represent, provide information and advices and support them. >>more

CP-ECA -Cerebral Palsy - European Communities Association


is a dynamic umbrella organisation founded in 1969 to help others to help themselves. It has members in over 60 countries mostly comprised of parent organisations and individuals with an interest in cerebral palsy. ICPS supplies vital expertise, advice, resources, information, a database and an international interchange of people, ideas and good practise in all aspects of CP. >>more

Eye Diseases C11




AMD Alliance International


Objectives: Generating awareness and understanding of age-related macular degeneration; - Promoting the importance of education, early detection, knowledge of treatment and rehabilitation options; and - Preserving vision and improving the quality of life of individuals affected by age-related macular degeneration. >>more

The European Blind Union, EBU


founded in 1984, is one of the six regional bodies of the World Blind Union. EBUs'object is: To represent all blind and partially sighted people in Europe.
- To promote the advancement of the interests of blind and partially sighted people including those with additional handicaps with the goal of achieving their equal rights as citizens and full participation in society.
>>more

Retina Europe


is a section of Retina International, representing 16 national patient organizations: Retina France, Pro Retina Deutschland, British RP Society, Retina Netherlands, Polish RP Society, Swedish RP Society, RP Society Norway, Finnish RP Society, Fighting Blindness Ireland, Hellenic Retina Society. The mission of Retina Europe and Retina International is to promote research and awareness into blinding retinal degenerative diseases like Retinitis Pigmentosa, Macula Degeneration, Usher Syndrome and allied retinal diseases. >>more

Male Urogenital Diseases C12 and Female Urogenital Diseases and Pregnancy Complications C13




European Kidney's Patients Association


founded in 1981, is the umbrella organisation for 23 national kidney patients' associations in Europe. The aims of CEAPIR are: - the raising of End Stage Renal Disease (ESRD) on the European Union (EU) public health agenda - the prevention of kidney disease - the establishing of a European quality standard in the treatment of ESRD the well-being, treatment, social security and living conditions of all ESRD-patients and their relatives,... >>more

European Infertility Alliance


is part of the International Consumer Support for Infertility (iCSi) network. The vision for the iCSi is to empower patients to become full partners in ART healthcare and public policy by building effective relationships with providers, governments and media world-wide. The establishment of iCSi was initiated in 1999 by ACCESS Australia in response to requests from patient leaders internationally: To meet and discuss common interests and concerns in managing support groups,... >>more


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