ERDERA: European Partnership Opens a New Era in Rare Disease Research

European Partnership Opens a New Era in Rare Disease Research

The European Rare Disease Research Alliance (ERDERA) was launched in September 2024, with an estimated budget of 380 million euros and the goal of improving the lives of 30 million rare disease patients in Europe and beyond.
• 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.
• ERDERA has just held a launch event on 28th October 2024 to present its roadmap for the next decade.

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 EUfunded 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