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 Program for Rare Diseases (EJP RD), the previous partnership which has run for the past 5 years.

Uniting Europe for Rare Disease Research and Innovation

With nearly 180 partners from 37 countries, a 7-year duration and a total estimated budget of €380 million – of which approximately 150 will come from the European Union via Horizon Europe and the rest from EU Member States, countries associated to Horizon Europe and public and private partners – ERDERA is the largest co-funded partnership in the field of rare disease research and innovation.

This partnership will unite these entities and the broader research community to advance a shared vision outlined in the Strategic Research and Innovation Agenda (SRIA) of ERDERA. It aims to address unmet medical needs and enhance the coordination of European and national research programmes.

The Partnership has outlined several components of activities, including:

Joint Transnational calls for interdisciplinary and collaborative research and innovation projects
Setting up of the Clinical research network to accelerate the clinical trials preparedness on rare diseases
Alignment and integration of national and European research plans
Knowledge and data sharing and analyses services
Enhancing international cooperation by supporting the Scientific Secretariat of the International Rare Disease Research Consortium (IRDiRC)
Boost public-private research collaboration models
Capacity-building and training, for researchers, but also clinicians and patients

ERN EpiCARE: Leading Global Collaboration in Rare Epilepsy Research

The ERN EpiCARE is participating in the WP25 “Global Collaboration: Strategic Alliances and Partnerships and is one of the leader of the Task 25.4. Alignment with the Research strategies of the European Reference Networks:

Recognition of ERNs research activities
Transition and continuation of ERICA achievements to ERDERA
Usage of already existing infrastructures/work, avoid duplication
Will launch an ERN Living lab, a platform for cross-fertilization between researchers and clinical experts

ERDERA

The European Rare Diseases Research Alliance

Visit the website

Sébile Tchaicha

For more information, please do not hesitate to contact Sébile Tchaicha, the ERN EpiCARE Research project manager ([email protected])