Find information on your rare disease
Orphanet is a directory of rare diseases, orphan medicines, patient organisations, professionals, expert centres, diagnostic tests, research projects, clinical trials, registries and biobanks.
Find your rare disease community or RareConnect
RareConnect is a safe, easy to use platform where rare disease patients, families and patient organisations can develop online communities and conversations acress continets and languages.
Rare disease personal stories
Browse our collection of personal rare diseases stories.
Read the stories of other people living with a rare disease on the Rare Disease Day website
Search by disease and country amng the hundreds of stories shared by people living with a rare disease and family members from around the world.
EURORDIS cannot respond to questions concerning the medical aspects of a rare disease. EURORDIS does not employ qualified medical personnel or information specialists to give medical advice, diagnose illness, or offer referrals. We strongly recommend that you seek the advice of your health care provider with questions regarding medical care. If you need help finding a patient group for your disease please search here or find sources of information on your disease here.