European Rare Diseases Research Alliance

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