ERDERA – 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 an 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. 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:  

1. Funding; 
2. 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; 
3. 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. 

EATRIS Role 

EATRIS will coordinate and manage the mentoring and consultancy activities of the ERDERA project (WP17). Mentoring support will be provided to selected projects using the Innovation Management Toolbox created as part of the EJP RD (European Joint Programme on Rare Diseases) project and the EATRIS database of mentoring experts. With the aim of providing the best support to the development of projects funded by ERDERA, EATRIS will contribute to exploring the need and the interest of providing additional expert support in the framework of a consultancy-based support service. 

In WP18, EATRIS will be involved in the Regulatory Support Service to support preclinical research to develop therapeutics, including ATMPs, for RD to facilitate a more accessible regulatory process by helping to implement new standards and tools that help developers meet regulatory requirements early on. 

Within the Public-Private Collaboration accelerator (WP22), EATRIS will also lead the asset profiling and the matchmaking and marketing activities to support selected projects to become investment ready through business planning, coaching, non-clinical development, also in collaboration with other relevant synergistic initiatives.