Building a Research and Innovation Ecosystem for Rare Diseases

News, Events, Networks, Other, Press Releases

The Brains4Brain foundation recently announced an important initiative dedicated to tackling a major challenge in healthcare: creating a comprehensive ecosystem for rare diseases. To launch this initiative, the foundation is hosting a preparatory event designed to present its project to policymakers, including Members of the European Parliament (MEPs), European Commission representatives, and officials from Member […]

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DeCODe Project Kick-Off: supporting Paediatric and Orphan Device Development

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The DECODE Project aims to improve the diagnosis of inherited metabolic disorders through collaborative research and innovative methodologies.

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Positive Results for MetabERN and ASUFC in the Five-Year Evaluation Process of European Reference Networks (ERN)

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The European Reference Network for Rare Metabolic Diseases and its coordinating centre receive outstanding results in the ERN five-year evaluation process.

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Call on the EU institutions and EU Member States’ governments to stand by the European Reference Networks

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European Reference Networks coordinators and patient groups address EU leadership to ensure continued support for rare disease healthcare across Europe.

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