Project name: ERDERA (European Rare Disease Research Alliance)
Funded by the European Union. However, the views and opinions expressed are solely those of the authors and do not necessarily reflect those of the European Union. Neither the European Union nor the granting authority can be held responsible for them.
Horizon Europe – Grant Agreement number 101156595.
Across Europe, 30 million people suffer from rare diseases, facing challenges in prevention, diagnosis, and treatment due to fragmented research efforts. To address this, the European Rare Diseases Research Alliance (ERDERA) seeks to make Europe a leader in rare disease research and innovation. ERDERA aims to create a robust ecosystem that prioritises patient needs by enhancing diagnostic methods, integrating digital transformations, and fostering public-private partnerships. This initiative includes a dedicated Clinical Research Network to expedite clinical trials and improve patient care. By aligning strategies across countries and harnessing comprehensive support services, ERDERA is set to accelerate the journey from research to impactful health solutions for rare disease patients throughout Europe.
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 rare disease patients, through better prevention, diagnosis and treatment. This Partnership will deliver a RD ecosystem that builds on the successes of previous programmes by supporting robust patient need-led research, developing new diagnostic methods and pathways, spearheading the digital transformational change connecting the dots between care, patient data and research, while ensuring strong alignment of strategies in RD research across countries and regions. Structuring goal-oriented public-private collaborations targeted at interventions all along the R&D value chain will ensure that the journey from knowledge to patient impact is expedited, thereby optimising EU innovation potential in RD.
To support its ambition and missions ERDERA has been designed as a comprehensive and integrated ecosystem of which structure can be compared to an institute encompassing three main parts: (i) funding, (ii) internal (in house) Clinical Research Network that implements research activities targeting clinical trial readiness of RDs and accelerating diagnosis and translation of research discovery into improved patient care, and (iii) related supporting services (Data, Expertise, Education and Training) as well as an acceleration hub that serve external and internal RD community, all supported by all-embracing coordination and strategy and foundational (inter)national alignment.