National Rare Disease Alliances

National rare disease alliances serve to bring together all the many rare disease organisations in a particular country. Alliance members include large and small patient organisations as well as professional organisations, and liaise with government bodies, scientific and medical organisations on the subject of rare diseases. National alliances exist in many, but not all, European countries. The characteristics of each alliance vary from country to country. Many national alliances in Europe are members of Eurordis. National Rare Disease Alliances in Europe Belgium RARE DISEASE ORGANISATION BELGIUM (RaDiOrg Belgium) www.radiorg.be Bulgaria National Alliance of People with Rare Diseases (NAPRD) Email: tomov@gaucherbg.org Croatia HRVATSKA UDRUGA BOLESNIKA S RIJETKIM BOLESTIMA/THE CROATIAN SOCIETY OF PATIENTS WITH RARE DISEASES www.rijetke-bolesti.hr Denmark Rare Disorders Denmark Sjældne Diagnoser www.raredisorders.dk France Alliance Maladies Rares French Rare Diseases Alliance www.alliance-maladies-rares.org Germany Allianz Chronischer Seltener Erkrankungen (ACHSE) German National Alliance for Chronic Rare Diseases 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 Rare Disorders Organisation (GRDO) www.grdo.ie Italy Federazione Italiana Malattie Rare (UNIAMO) Italian Federation for Rare Diseases www.uniamo.org Luxembourg Association Luxembourgeoise d’aide pour les personnes Atteintes de maladies Neuro-Musculaires et de maladies rares (ALAN asbl) Luxembourg Association for Neuromuscular and Rare Diseases www.alan.lu Netherlands VSOP - Umbrella organisation of parent and patient organisations for genetic, congenital and rare disorders www.vsop.nl Portugal Aliança Portuguesa de Associaçiones das Doenças Raras e-mail: aliancadoencasraras@gmail.com Federaçao Portuguesa de Doenças Raras (FEDRA) www.fedra.pt Romania Romanian National Alliance for Rare Diseases (RONARD) www.apwromania.ro Spain Federación Española de Enfermedades Raras (FEDER) Spanish Rare Disease Federation www.enfermedades-raras.org Sweden Sällsynta diagnoser - Rare Diseases Sweden formerly known as The Swedish Association of Rare Disorders www.sallsyntadiagnoser.se United Kingdom Rare Diseases UK - Genetic Interest Group www.gig.org.uk National Rare Disease Alliances Outside of Europe Canada Canadian Organization for Rare Disorders (CORD) www.raredisorders.ca Malaysia Malaysian Rare Disorder Society (MRDS) www.mrds.org.my New Zealand New Zealand Organisation for Rare Disorders (NZORD) www.nzord.org.nz United States of America National Organization for Rare Disorders, Inc. (NORD) www.rarediseases.org Taiwan Taiwan Foundation for Rare Disorders (TFRD) www.tfrd.org.tw