EURORDIS - Rare Disease Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 988 rare disease patient organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
Role within Screen4Care
EURORDIS' role in Screen4Care as a partner is substantial as we bring multi-stakeholder perspectives and ensure patient engagement at different levels including:
- EURORDIS chairs the Patient Advisory Board which is comprised of up to 10 rare disease patient representatives who will provide high level advice and strategic recommendations for the project;
- Patient input will be ensured also more specifically in several activities including through the definition of actionable diseases for genetic newborn screening with the help of the EURORDIS NBS Working Group and the Rare Barometer.
- The co-design of the Screen4Care platform will be facilitated through focus groups' activities with patient representatives from different disease areas and from the Data and Digital Advisory Group (DAG).