Web2.0 services & tools

A listing of services and interactive tools which provide online patient communities to people living with rare diseases enabling them to connect with others and stay up to date

 

Online Communities

A listing of services which provide online patient communities to people living with a rare disease, enabling them to connect with others

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Medical RSS feeds

A listing of services which aggregate specific information related to rare diseases

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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