“CDG at the CMHI” is a two-day event bringing together the scientific community, clinicians, patients, and their families, which will take place on May 29–30, 2026, at the Children’s Memorial Health Institute (CMHI) in Warsaw, Poland. The first day of the event is dedicated to lectures and expert discussions on the diagnosis, symptoms, and modern treatment […]
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
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
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 MetabERN webinar on Smith-Lemli-Opitz syndrome featuring expert presentations and patient perspectives from the European SLOS Natural History project.
Webinar – Smith-Lemli-Opitz syndrome from a holistic family perspective 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 »
The XVI International Glycogen Storage Disease Conference was held in Getafe on 3-4 October 2025, organised by AEEG. Watch the recorded sessions.
XVI International Glycogen Storage Disease (GSD) Conference Read More »
EU-funded national workshops on cross-border healthcare and patients’ rights. Events in Prague (26 Sept) and Groningen (30 Oct) 2025.
upcoming national workshops on Cross-border Healthcare Read More »
A MetabERN webinar on hyperammonaemia diagnosis, testing and management. With expert presentations and insights from Metabolic Support UK.
Upcoming Webinar: Think Ammonia! Test and Diagnosis of Hyperammonaemia in time Read More »
Free video lectures by UZA and MetabERN on recognising Fabry disease in cardiology, covering genetic aspects and clinical red flags for cardiologists.
Recognising Fabry Disease in Cardiology Read More »
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