We are thrilled to announce the launch of the ERDERA partnership, an initiative spearheaded by the European Union under Horizon Europe and led by France’s National Institute of Health and Medical Research (INSERM). This partnership aims to transform the Rare Disease landscape by joining the efforts of more than 170 partners (public and private organizations) from 37 countries.
Duchenne Data Foundation with its extensive expertise in patient empowerment activities, data management, implementation of FAIR data principles and AI-based data modeling and analysis, will contribute in several components of the ERDERA activities, including:
- Knowledge and data sharing and analyses services
- Capacity-building and training, for researchers, but also clinicians and patients
For more information on ERDERA, please read the press release.
About ERDERA
The European Rare Diseases Research Alliance (ERDERA) aims to improve the health and well-being of the 30 million people living with a rare disease in Europe, by making Europe a world leader in Rare Disease (RD) research and innovation, to support concrete health benefits to RD patients, through better prevention, diagnosis and treatment. ERDERA aims to build on past EU-funded projects by developing a robust infrastructure for data and expertise, funding new research, providing training, and translating findings into practical solutions for RD patients. It will also work to align research strategies internationally and nationally.