The hybrid high-level conference on “Patients’ rights on cross-border healthcare and the European Reference Networks” will take place on 26 March 2026. This high-level conference will focus on the EU’s achievements in making cross-border healthcare more accessible, as well as at the barriers to making it more widely known and used. The European Commissioner for Health […]
The 23rd Postgraduate Course on Lysosomal Storage Disorders will take place from 10 to 13 June 2026 in Nierstein, Germany. The course, which has a long-standing tradition, is organised by the Department of Paediatric and Adolescent Medicine at the University Medical Center Mainz. It offers a comprehensive exploration of lysosomal storage disorders, facilitated by experts in the field. Participants will engage
23rd Postgraduate Course on Lysosomal Storage Disorders Read More »
We are proud to share the results from a crucial survey on diagnostic and monitoring activities for patients with metabolic disorders, a collaborative effort between Società Italiana per lo Studio delle Malattie Metaboliche Ereditarie e lo Screening Neonatale (SIMMESN) and MetabERN Italy, led by Prof Carlo Dionisi Vici (Bambino Gesù Children Hospital, Rome, Italy). This initiative
MetabERN in collaboration with the Greek patient organization, Krikos Zois, will be hosting a webinar on Young Patient Advocacy and Transition on 19 March at 17:00 Central European Time (CET). This session as part of the Patient Therapeutic Education Programme (PTEP) is designed for patients, patient representatives and healthcare professionals involved in the study and care of
Webinar: Young Patient Advocacy – A Call to Action for Transition! Read More »
This session is scheduled for March 5th at 16:00 CET and focuses on presenting the International Recommendations on the evaluation and management of persistent hypoglycemia in neonates, infants, and children. As part of a national inter-ERN collaboration, this webinar will also be aimed primarily at the Italian MetabERN and Endo-ERN centers. The session will be held
The last day of February is a special occasion dedicated to raising awareness about rare diseases. Rare Disease Day aims to shine a light on these conditions and to advocate for improved access to treatment and care for the millions of individuals and families affected by these diseases. In the European Union, a rare disease is
Rare Disease Day 2026 – More than you can imagine! Read More »
A webinar on brain metabolism of Coenzyme Q, covering COQ2 deficiency and therapeutic strategies. Part of the Brain Metabolism Dialogues series.
Brain metabolism of CoQ, from basic science to clinical practice – Webinar Read More »
ECRD 2026, the largest patient-led rare disease conference in Europe, takes place in Prague on 3-4 June. Registration and poster submissions are open.
European Conference on Rare Disease (ECRD 2026) Read More »
MetabERN and UZA host a Fabry Disease Day in Brussels on 28 March 2026. Focus sessions, expert talks and workshops. Free registration.
MetabERN Fabry Disease Day Read More »
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 webinar on autophagy and brain metabolism, part of the Brain Metabolism Dialogues series. Keynote by Prof. Antonio Zorzano.
Autophagy in Brain Metabolism Webinar Read More »
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 »
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