7 ways to find information on your rare disease
- Search for a EURORDIS member patient organisation that represents your disease
EURORDIS has 826 member organisations from 70 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
- Find a helpline in your country
Rare disease helplines offer advice to a patient or family member on how to find the information they need to manage living with a rare disease.
- Find information related to your disease on eurordis.org
- Find your rare disease community on RareConnect
RareConnect is a safe, easy to use platform where rare disease patients, families and patient organisations can develop online communities and conversations across continents and languages. Find your rare disease online community.
- Read the stories of other people living with a rare disease on the Rare Disease Day website
Search by disease and countryamong the hundreds of stories shared by people living with a rare disease and family members from around the world.
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