“Rare Diseases: Placing Patients at the Centre of a European Framework”, marked a key step towards an EU Action Plan for Rare Diseases.
The event was hosted at the European Parliament, and co-organised by MEP Nicolás González Casares and EURORDIS-Rare Diseases Europe
On 23 April 2026, the event "Rare Diseases: Placing Patients at the Centre of a European Framework" took place at the European Parliament, marking an important milestone towards the development of an EU Action Plan for Rare Diseases. Co-organised by MEP Nicolás González Casares and EURORDIS-Rare Diseases Europe, the meeting brought together policymakers, patient representatives, clinicians, and stakeholders from across the rare disease community to advance discussions on a future European framework and a dedicated Rare Disease Action Plan.
During the event, participants highlighted the urgent unmet needs of the 30 million people living with a rare disease in Europe and stressed the importance of ensuring that patient voices remain at the centre of future European policies.
The discussions also underlined the key role of the European Reference Networks (ERNs) in strengthening collaboration, expertise sharing, education, and access to specialised care for people living with rare and complex diseases across Europe. As recognised by the European Commission, the 24 ERNs continue to play a central role in improving diagnosis, treatment pathways, and patient outcomes through cross-border cooperation and patient-centred care.
Read more at the EURORDIS website.