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Newsletter Article


Rare Disease Day 2019: E.U. Launches New Platform to Support Better Diagnosis and Treatment

Country Correspondent: Roosa Tikkanen

An estimated 30 million Europeans are affected by rare illnesses such as cystic fibrosis or Huntington’s disease. On February 28, Rare Disease Day, the E.U. launched a new a web-based knowledge-sharing registration platform to give researchers, policymakers, and patients expanded access to data to support better diagnosis and treatment. Around 600 individual rare disease registries exist in Europe, each managed by individual hospitals, research institutions, pharmaceutical companies, or patient advocacy groups. The new platform aims to promote the interoperability of data across these registries.

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