The European Rare Diseases Research Alliance (ERDERA)

Today, around 7000 rare diseases affect more that 300 million people worldwide, yet the majority of rare and ultra rare diseases still lack a therapeutic option. Patients endure a long journey to receive a diagnosis, which typically takes four years for known diseases; however, 50% of patients never obtain a definitive molecular diagnosis. Moreover, 52% of patients and caregivers report that their condition has a severe impact on their daily lives.

To address these important issues, 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.

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.

With an estimated overall budget of 380 million euros until 2031, ERDERA aims to have a major impact on rare diseases by supporting patient driven research to develop new treatments and diagnostic pathways and harnessing the potential of health and research data, Artificial Intelligence (AI) and digital technologies. The partnership will be crucial in helping shape the European Research Area on Rare Diseases. To this end, ERDERA will promote the coordination and integration of national and regional research strategies, fostering public-private partnerships and global collaborations, and accelerating the transition from knowledge to viable solutions for patients.