Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases

News, Events, Networks, News for Patients, Press Releases

Last week, the High-Level Meeting on a European Innovation and Care Ecosystem for Rare Diseases (HLM Rare 2025) hosted in Brussels, from 9-11 December 2025, by the European Reference Networks, MEP Vytenis Andriukaitis (S&D, Lithuania) and Prof. Maurizio Scarpa (President of the Brains for Brain Foundation and MetabERN Coordinator), marked a landmark moment for the 30 […]

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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

News, Networks, Press Releases

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 »

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

News, Networks, Press Releases

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

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

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

Networks, News, News for Patients, Press Releases

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

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The redesigned MetabERN website is online!

News, Press Releases

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 »

The first survey to reflect on the social and medical needs of rare metabolic patients and families in Europe

News, Press Releases

A MetabERN survey highlights the social and medical challenges faced by IMD patients and caregivers across 25 European countries.

The first survey to reflect on the social and medical needs of rare metabolic patients and families in Europe Read More »

Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases

Autophagy in Brain Metabolism Webinar

High-Level Meeting on the European Research and Innovation Ecosystem for Rare Diseases

Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases

Building a Research and Innovation Ecosystem for Rare Diseases

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

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

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

The redesigned MetabERN website is online!

The first survey to reflect on the social and medical needs of rare metabolic patients and families in Europe

Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases

Autophagy in Brain Metabolism Webinar

High-Level Meeting on the European Research and Innovation Ecosystem for Rare Diseases

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