HLM Rare 2025 takes place in Brussels from 9-11 December. A high-level initiative on rare disease research and innovation in Europe.
High-Level Meeting on the European Research and Innovation Ecosystem for Rare Diseases Read More »
A European Parliament hearing on building a research and innovation ecosystem for rare diseases, organised by Brains4Brain Foundation on 29 April 2025.
Building a Research and Innovation Ecosystem for Rare Diseases Read More »
A public consultation by the European Parliament’s SANT Committee to gather insights on rare disease challenges, open until 31 March 2025.
European Parliament Consultation on Rare Diseases Read More »
MetabERN organizes national workshops to educate patients and families about their rights and the challenges of rare diseases.
National Workshops on Patients’ Rights and Rare Diseases Read More »
MetabERN contributes to the ERICA General Assembly, collaborating with European Reference Networks to enhance rare disease research.
ERICA 4th General Assembly & ERN Research Conference Read More »
The Brains for Brain Foundation announces a special workshop at Sidney Sussex College combining scientific exchange with a tribute to Dr. David Begley.
B4B ANNUAL WORKSHOP AND SPECIAL CELEBRATION 9-11 SEPTEMBER 2024 Read More »
ERDERA Paris announces two Project Manager positions focused on rare disease research, covering funding, education, data management and expertise services.
Career Opportunities at ERDERA Read More »
The Regional Coordinating Centre for Rare Diseases of ASU FC seeks a Medical Writer to support MetabERN’s research promotion activities in Italy.
Job opening: Medical Writer / Research Facilitator Read More »
A three-day interactive course for healthcare professionals on metabolic myopathies diagnosis and management, hosted in Split by Recordati Foundation.
Metabolic myopathies – challenges and solutions / Split, Croatia on May 16-18, 2024 Read More »
MetabERN launches a worldwide survey for PMD specialists to document vitamin and cofactor treatments, aiming to develop standardized recommendations.
The MetabERN Board reunites in Prague for its first face-to-face meeting since the pandemic, discussing key developments in rare diseases.
MetabERN Board meeting in Prague, 13-15 October 2022 Read More »
The International Rare Diseases Research Consortium invites experts to join its Diagnostic Committee for advancing rare disease research.
IRDiRC Diagnostic Scientific Committee Nomination Call Read More »
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