Orphanet: Search for a patient organisation

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Patient organisations in Europe

Patient organisations can be dedicated to one particular rare disease or a group of rare diseases. Some patient organisations represent a disease across several countries while others cover all rare diseases in one country. For this reason, it is possible to search in Orphanet for patient organisations in several ways:

  • by searching for a specific organisation
  • by searching for organisations by disease or group of diseases
  • by searching for patient organisations by country
  • by searching for patient organisations by disease (or group of diseases) and country

European Umbrella Organisation for Rare Disease Patient Organisations

Patient organisations in Europe have recognise the power in gathering together in order to make an impact on national and European policies in the field of orphan drugs and rare diseases within EURORDIS (European Organisation for Rare Diseases).
This NGO was founded in March 1997. EURORDIS actions consist of supporting, promoting and following up the implementation of the European Regulation on Orphan Drugs; demonstrating the needs of patients and patient organisations and supporting the development of a EU policy on rare diseases; encouraging and facilitating the creation of alliances at the national level, gathering together patient organisations of rare diseases in each country of the EU, in order to better relay European policies, to have a better action at the national level and to allow the emergence of a European network of these alliances; and implementing action programmes.

National Alliances for Rare Diseases in Europe

Patient organisations of single diseases or groups of diseases have joined together in several European countries to form alliances or federations: You can find more information about these organisations on the Eurordis Website.

Country The Alliance Web Site
Belgium Rare Diseases Organisation Belgium (RaDiOrg) www.radiorg.be
Bulgaria National Alliance of People with Rare Diseases (NAPRD) www.raredis.org
Denmark Rare Disorders Denmark www.raredisorders.dk
France Alliance Maladies Rares www.alliance-maladies-rares.org
Germany Allianz Chronischer seltener Erkrankungen e.V. (ACHSE) www.achse-online.de
Greece Greek Alliance for Rare Disease (PESPA) www.pespa.gr
Hungary Hungarian Federation of People with Rare and Congenital Diseases - Rare Diseases Hungary (HUFERDIS) www.rirosz.hu
Ireland Genetic and Inherited Disorders Organisation (GIDO) http://www.grdo.ie/
Italy Federazione Italiana Malattie Rare (UNIAMO) www.uniamo.org
Luxembourg Luxembourg Association for Neuromuscular and Rare Diseases (ALAN) www.alan.lu
Netherlands Vereniging Samenwerkende Ouder- en Patiëntenorganisaties (VSOP) www.vsop.nl
Spain Federación Española de Enfermedades Raras (FEDER) www.enfermedades-raras.org
Sweden The Swedish Association of Rare Disorders (Riksförbundet Sällsynta diagnoser) www.sallsyntadiagnoser.se