ERDERA Kick-off
The European Rare Diseases Research Alliance (ERDERA) kicks off this September, 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.
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./li>
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 will hold a launch event on 28 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 present its ambition in the wider context of the EU rare diseases research strategy, ERDERA will hold a launch event next 28-29 October where representatives from the EC, the French Ministries of Health and Research, ERDERA leadership team and patient organisations will take the floor. The opening session schedule for 28 October between 2-3.30 pm (CET), will be open to members of the press who can join online. More information will follow closer to the event.
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./li>
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 will hold a launch event on 28 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 present its ambition in the wider context of the EU rare diseases research strategy, ERDERA will hold a launch event next 28-29 October where representatives from the EC, the French Ministries of Health and Research, ERDERA leadership team and patient organisations will take the floor. The opening session schedule for 28 October between 2-3.30 pm (CET), will be open to members of the press who can join online. More information will follow closer to the event.
Target: National contact points, Participants
Themes: Cluster 1 Health, Pillar 2
