The HLM Rare 2025 launched a Declaration setting strategic priorities for rare disease research and innovation in Europe.
Declaration on the European Innovation and Care Ecosystem for Rare and Complex 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 »
The DECODE Project aims to improve the diagnosis of inherited metabolic disorders through collaborative research and innovative methodologies.
DeCODe Project Kick-Off: supporting Paediatric and Orphan Device Development Read More »
The European Reference Network for Rare Metabolic Diseases and its coordinating centre receive outstanding results in the ERN five-year evaluation process.
European Reference Networks coordinators and patient groups address EU leadership to ensure continued support for rare disease healthcare across Europe.
MetabERN’s new website offers improved navigation, patient resources, and updated content for the rare metabolic disease community.
The redesigned MetabERN website is online! Read More »
A MetabERN survey highlights the social and medical challenges faced by IMD patients and caregivers across 25 European countries.
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