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ERICA logo

ERICA (European Rare Disease Research Coordination and Support Action) aim to strengthen the existing clinical research and innovation capacities of the individual ERNs to allow them to perform collaborative clinical research that meets the regulatory standards required by regulators and Health Technology Assessment (HTA) agencies.

Project duration:

March 2021 – February 2025

Funding body

Horizon Europe

EURORDIS role in the project

EURORDIS is a project partner, ensuring that the rare disease patient community perspective is embedded on all aspects linked to the development of Clinical Research Networks, including but not limited to – health data use, establishing research priorities and developing a patient engagement in clinical research. EURORDIS regularly engages and shares information with the members of ePAG Research and Registries Working Group to capture their feedback on specific aspects around ERN registries and health data use and sharing for research. EURORDIS is also drafting a framework for Patient Engagement in clinical trials.

EURORDIS priorities on Research

Research leads to a better understanding of rare diseases, quicker and more accurate diagnosis, innovative treatments and cures, and better health care. It represents hope for the 30 million people living with a rare disease in Europe and their families.

Contact person

Inés Hernando,
ERN and Healthcare Director