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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European Parliament Consultation on Rare Diseases

News, Networks, News for Patients, Other

On 28 February 2025, the newly established Committee on Public Health (SANT) of the European Parliament launched an important public consultation focused on rare diseases. The objective of this consultation is to inform the Committee’s upcoming initiatives by enhancing understanding and knowledge of the challenges encountered by individuals affected by rare diseases. Additionally, it seeks

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National Workshops on Patients’ Rights and Rare Diseases

Events, News for Patients, Other

MetabERN organizes national workshops to educate patients and families about their rights and the challenges of rare diseases.

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ERICA 4th General Assembly & ERN Research Conference

News, Events, Networks, Other

MetabERN contributes to the ERICA General Assembly, collaborating with European Reference Networks to enhance rare disease research.

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B4B ANNUAL WORKSHOP AND SPECIAL CELEBRATION 9-11 SEPTEMBER 2024

News, Events, Other

The Brains for Brain Foundation announces a special workshop at Sidney Sussex College combining scientific exchange with a tribute to Dr. David Begley.

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Career Opportunities at ERDERA

Other

ERDERA Paris announces two Project Manager positions focused on rare disease research, covering funding, education, data management and expertise services.

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Job opening: Medical Writer / Research Facilitator

News, Networks, Other

The Regional Coordinating Centre for Rare Diseases of ASU FC seeks a Medical Writer to support MetabERN’s research promotion activities in Italy.

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Metabolic myopathies – challenges and solutions / Split, Croatia on May 16-18, 2024

Other

A three-day interactive course for healthcare professionals on metabolic myopathies diagnosis and management, hosted in Split by Recordati Foundation.

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