EURORDIS News: Stay up to date with news from the rare disease community!

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Sign up in the box on the right to receive our eNews every two weeks, as well as information about our activities and fundraising.

Each eNews features information on: rare disease events/ awareness days around the world, RareConnect communities, national rare disease plans, EURORDIS initiatives such as Rare Disease Day, orphan drug designations and marketing authorisations, and also includes stories from people living with a rare disease and videos via EURORDIS TV.

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Also Available in  FrenchGermanSpanishItalian, Portuguese and Russian

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Read examples of recent eNews

EURORDIS Photo Contest 2015: And the Winners Are…

Out now – 2016 Rare Disease Day video!

Living with a rare disease: Okamoto syndrome

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases