7 ways to find information on your rare disease
- Search for a EURORDIS member patient organisation that represents your disease
EURORDIS has 1000 member organisations from 74 countries.
Start typing a rare disease and select a disease from the dropdown list that then displays
- Search Orphanet

Orphanet
is a directory of rare diseases, orphan medicines, patient organisations, professionals, expert centres, diagnostic tests, research projects, clinical trials, registries and biobanks.
- Find the rare disease national alliance in your country
National alliances federate patient organisations from a wide range of diseases within a particular country.
Choose your country
Belgium
Rare Disease Organisation Belgium (RaDiOrg Belgium)
www.radiorg.be
Bulgaria
National Alliance of People with Rare Diseases (NAPRD)
rare-bg.com
Germany
Allianz Chronischer Seltener Erkrankungen (ACHSE)
German National Alliance for Chronic Rare Diseases
www.achse-online.de
Italy
Federazione Italiana Malattie Rare (UNIAMO)
Italian Federation for Rare Diseases
www.uniamo.org
Luxembourg
ALAN - Maladies Rares Luxembourg
www.alan.lu
Netherlands
VSOP - Vereniging Samenwerkende Ouder En Patiëntenorganisaties
www.vsop.nl
Russian Federation
National Association of Patients with Rare Diseases '"GENETICA"
www.nacgenetic.ru
United Kingdom of Great Britain and Northern Ireland
New Zealand
New Zealand Organisation for Rare Disorders (NZORD)
www.nzord.org.nz
Taiwan, Province of China
Taiwan Foundation for Rare Disorders (TFRD)
www.tfrd.org.tw
- Find information related to your disease on eurordis.org