Rare Disease Day 2026: United for the 300 million people living with a rare disease
ERN-EuroBloodNet joins the global movement and highlights the role of ERNs in improving access to specialised expertise across Europe.
Rare Disease Day is a global initiative created in 2008 by EURORDIS - Rare Diseases Europe to raise awareness for the 300 million people worldwide living with a rare disease, as well as their families and carers. It highlights the ongoing challenges faced by the rare disease community and the need for sustained attention and action.
The long-term goal of the campaign is to ensure equitable access to timely diagnosis, appropriate treatment, quality healthcare, and social support for all people affected by rare diseases. Since its launch, with participation from 18 countries, Rare Disease Day has grown into a global movement now observed in more than 100 countries worldwide.
In Europe, the European Reference Networks (ERNs) play a key role in advancing these objectives by connecting expertise across borders and improving access to specialised care for people living with rare and complex conditions. On the occasion of Rare Disease Day 2026, the Directorate-General for Health and Food Safety (DG SANTE) has prepared dedicated materials on the European Reference Networks (ERNs), available here. Established in 2017, the 24 ERNs bring together more than 1,600 specialised centres across nearly 400 hospitals in EU Member States and Norway, connecting experts to improve the diagnosis, care, and treatment of people living with rare and complex diseases.
ERN-EuroBloodNet supports Rare Disease Day and, together with the ERN community, continues to contribute to a truly integrated European rare disease ecosystem!