European Rare Diseases Research Alliance (ERDERA)

The European Rare Diseases Research Alliance (ERDERA) kicked off in September 2024, with an estimated budget of 380 million euros and the aim of improving the lives of 30 million rare disease patients in Europe and beyond.

What is it?

• The new partnership, championed by the European Union under Horizon Europe and Members States, is led by the National Institute of Health and Medical Research – INSERM (France). It integrates over 170 organisations from the public and private sectors to advance prevention, diagnosis and treatment research in rare diseases.
• The European Union is expected to contribute around 150 million euros to this co-funded partnership via Horizon Europe, while the rest of the funding will come from members states, countries associated to Horizon Europe and in cash and in-kind contributions from public and private partners.
• The alliance takes over the co-fund EJPRD to bring under one roof all knowledge, resources and services, boost clinical research and spur innovation to make Europe a world leader in this field.

Where does ERDERA come from?

The European Rare Diseases Research Alliance (ERDERA) has been set up to build on the advancements made by former EU-funded projects such as SOLVE-RD, ERICA and the European Joint Programme for Rare Diseases (EJP RD), the previous partnership which has run for the past 5 years.

What is next?

ERDERA will continue developing a robust and comprehensive data and expertise infrastructure and innovative clinical research services -with a focus on advanced therapies-, funding new research projects, providing training and expediting translation of findings into tangible solutions for patients. It will also ensure alignment on international and national rare diseases research strategies.