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 »
A forum on rare neurotransmitter diseases in Zagreb on 16 May 2025, bringing together researchers, clinicians, patients and caregivers.
Rare Neurotransmitter Diseases (RND) Researchers Forum Read More »
Hey, want to upgrade to pro plan?
Upgrade Now
& get 25% off
Offer valid only for 24 hrs.
