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 »
On the occasion of Fabry Awareness Month, in April, the Antwerp University Hospital (UZA) and MetabERN will host a Fabry Disease Day event on 28 March 2026 in the Maison de la Poste, Brussels, Belgium. International experts, including Dr. Uma Ramaswami (Royal Free Hospital), Dr. Guy Hans (Antwerp University Hospital), and Dr. Valentine Gillion (Cliniques universitaires
MetabERN Fabry Disease Day 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 MetabERNÂ Coordinator), marked a landmark moment for the 30
Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases Read More »
The “Brain Metabolism Dialogues” webinar series is back! The upcoming webinar, which will take place on Monday, 15 December 2025, at 5 p.m. CET, will focus on a specific cell trafficking biological function, autophagy. This session will offer an integrated view of autophagy, a fundamental cellular recycling process, and its crucial relationship with brain metabolism.
Autophagy in Brain Metabolism Webinar 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 Spanish Association of GSD Patients (AEEG), member of our board of patient organisations, has recently organised the 16th International Conference on GSD. The conference was held with great success on October 3–4, 2025, at the University Hospital of Getafe. The event brought together healthcare professionals, researchers, patients, and families, reaffirming its role as one
XVI International Glycogen Storage Disease (GSD) Conference Read More »
What happens when your body is under siege, but the world can’t see the battle?Living with Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke-like episodes (MELAS) syndrome means navigating a rare, often invisible disease that reshapes every aspect of life. This Global Mental Health Day (October 10), we’re honored to share a patient’s story in a
Rare disease, chronic pain and mental health: a patient’s story 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 »
Elevated ammonia levels in the blood may result from various inborn errors of metabolism and can cause neurological impairment or mortality. This represents a time-sensitive medical situation, and prompt testing, diagnosis and management are essential to prevent life threatening events. On September 18 at 17.00 CEST, MetabERN is hosting a webinar titled “Think Ammonia! Test
Upcoming Webinar: Think Ammonia! Test and Diagnosis of Hyperammonaemia in time 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 »
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