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 »
A video testimonial for World Mental Health Day. A patient living with MELAS syndrome shares her journey with chronic pain and mental well-being.
Rare disease, chronic pain and mental health: a patient’s story 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 patient story on living with MELAS syndrome and chronic pain, alongside an expert presentation on pain management strategies.
Chronic Pain and Mitochondrial Disease: Nanda’s Story and Expert Insights 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 »
A public consultation by the European Parliament’s SANT Committee to gather insights on rare disease challenges, open until 31 March 2025.
European Parliament Consultation on Rare Diseases Read More »
A Rare Disease Day event held at Udine Castle on 11 February 2025, organised by UNIAMO in collaboration with MetabERN.
#UNIAMOleforze campaign: a Rare Diseases Day Event Held in Udine Castle Read More »
Hey, want to upgrade to pro plan?
Upgrade Now
& get 25% off
Offer valid only for 24 hrs.
