News for Patients

ECRD 2026, the largest patient-led rare disease conference in Europe, takes place in Prague on 3-4 June. Registration and poster

MetabERN and UZA host a Fabry Disease Day in Brussels on 28 March 2026. Focus sessions, expert talks and workshops.

The HLM Rare 2025 launched a Declaration setting strategic priorities for rare disease research and innovation in Europe.

The XVI International Glycogen Storage Disease Conference was held in Getafe on 3-4 October 2025, organised by AEEG. Watch the

A video testimonial for World Mental Health Day. A patient living with MELAS syndrome shares her journey with chronic pain

EU-funded national workshops on cross-border healthcare and patients' rights. Events in Prague (26 Sept) and Groningen (30 Oct) 2025.

A patient story on living with MELAS syndrome and chronic pain, alongside an expert presentation on pain management strategies.

A MetabERN webinar on hyperammonaemia diagnosis, testing and management. With expert presentations and insights from Metabolic Support UK.

A one-day workshop on cerebrotendinous xanthomatosis (CTX) hosted by the CTX Alliance in Kyoto, Japan on 1 September 2025.

Free video lectures by UZA and MetabERN on recognising Fabry disease in cardiology, covering genetic aspects and clinical red flags

A forum on rare neurotransmitter diseases in Zagreb on 16 May 2025, bringing together researchers, clinicians, patients and caregivers.

A public consultation by the European Parliament's SANT Committee to gather insights on rare disease challenges, open until 31 March