ERDERA

Overview

Project Summary

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. 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 atraction for R&D
(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
(iii) related supporting services (Data management and analysis, Regulatory support, Expertise, Education and Training) that serve external and internal RD community
All supported by all-embracing coordination and strategy and foundational (inter)national alignment.

Main Goals

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;
- structuring goal-oriented public-private collaborations targeted at interventions all along the R&D value chain;
- ensuring strong alignment of strategies in RD research across countries and regions. 

This way, ERDERA will ensure that the journey from knowledge to patient impact is expedited,  optimising EU innovation potential in RD.

Project Details