Services to Patients

EURORDIS promotes the implementation of services adapted to the situation and special needs of people living with rare diseases.

 

Specialised Social Services

Specialised Social Services are instrumental to the empowerment of people living with rare diseases and essential to the improvement of their well-being and health.

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RareConnect

RareConnect.org, the online network for rare disease communities, brings together patients, families, and groups from around the world who might otherwise be isolated

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EURORDIS Open Academy

The EURORDIS Open Academy brings together all EURORDIS trainings with the goal of building the capacity of rare disease patient advocates.

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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