The 13th European Conference on Rare Disease and Orphan Products (ECRD 2026) will take place in Prague and online on 3 and 4 June 2026. ECRD is the largest, patient-led policy-shaping conference for rare diseases in Europe. The event serves as an instrumental tool for advancing policy objectives that improve the lives of people living with a […]
European Conference on Rare Disease (ECRD 2026) Read More »
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
Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases Read More »
We are excited to announce the High-Level Meeting (HLM RARE) focused on strengthening the European research and innovation ecosystem for rare diseases. This important initiative will take place in Brussels from December 9-11, 2025. HLM RARE is led by the Brains for Brain Foundation (B4B) under the presidency of Prof. Maurizio Scarpa, working in close
High-Level Meeting on the European Research and Innovation Ecosystem for Rare Diseases Read More »
The MetabERN Annual Board Meeting 2025 is scheduled for 6 – 8 November in the beautiful city of Copenhagen, Denmark. Building on the success of last year’s meeting in Budapest, the Annual Board Meeting 2025 promises to be an insightful and highly engaging scientific event for our network. It will feature inspiring talks and highlights of our
MetabERN Annual Board Meeting 2025 is approaching Read More »
The Irish Society of Inherited Metabolic Disorders (ISIMD) Annual Conference will take place on Friday, 14th November 2025 in Dublin, Ireland. The ISIMD hybrid conference will focus on ‘New Insights and Personalised Treatments in Inborn Metabolic Disorders’ and is open to all health professionals with an interest in Inherited Metabolic Disorders. Online participation is also
ISIMD Annual Conference 2025 Read More »
In 2024 and 2025 the European Commission has funded a series of national workshops to raise awareness on patients’ rights and obligations in cross-border healthcare, by improving information to patients and doctors. The workshops have been organised at national level by interested EU member states. Save the date and register for the two upcoming national
upcoming national workshops on Cross-border Healthcare Read More »
The 14th International Network for Undiagnosed Diseases (UDNI) Conference will take place from 28 to 31 October 2025 in Rio de Janeiro, Brazil. The International Network for Undiagnosed Diseases (UDNI) was established in 2014 as a collaborative initiative spanning multiple countries. Its primary mission is to improve diagnostic rates for individuals living with undiagnosed conditions.
14th International Network for Undiagnosed Diseases (UDNI) Conference Read More »
The CTX International Workshop Series will be held on Monday, September 1 in Kyoto, Japan as a satellite meeting, prior to the 2025 International Congress of Inborn Errors of Metabolism (ICIEM) taking place from 2 to 6 September 2025. On behalf of the CTX Alliance and the organizing committee, it is our pleasure to invite you
One-Day International CTX Workshop Series Read More »
Join the Rare Neurotransmitter Diseases (RND) Researchers Forum which will take place on May 16, 2025, in Zagreb, Croatia, under the theme: “Connecting the Network: From Basic Research and Clinical Phenotypes to Patient Voice.” The aim of this event is to contribute to knowledge exchange on research advancements, diagnostic tools, and treatment modalities and provide
Rare Neurotransmitter Diseases (RND) Researchers Forum Read More »
Join the iDR25 – Medicines Reimagined conference, organised by REMEDi4ALL, and Beacon, which will be held on 7 – 8 May 2025 in Amsterdam, The Netherlands. This exciting event will focus on unlocking the potential of existing drugs for patient benefit. It offers a unique opportunity to engage with global experts, key opinion leaders, and professionals who are at the forefront of drug repurposing
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The conference entitled Towards an EU Action Plan on Rare Diseases will take place on 10 April 2025 at 9 a.m. at the Medical University in Warsaw, Poland, hosted by the European Economic and Social Committee (EESC), the Polish Ministry of Health, and the Medical University of Warsaw. The conference will take place under the auspices of
‘Towards an EU action plan on rare diseases’ Conference Read More »
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
Building a Research and Innovation Ecosystem for Rare Diseases Read More »
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