EURORDIS’ involvement in Screen4Care
EURORDIS is a non-profit alliance of more than 900 rare disease patient organisations from 76 countries that seek to improve the quality of life of people living with rare diseases 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.
Screen4Care follows an integrated approach of strong patient involvement in the project’s overall structure. EURORDIS, as the alliance for rare disease patients in Europe, is a key partner, located at the heart of Screen4Care and involved in all areas of focus. It is directing and advising all partners on the priorities, needs and perspectives of people living with rare diseases. In addition, EURORDIS will also ensure the engagement of critical stakeholders through its well-defined activities:
- EURORDIS chairs the Patient Advisory Board which is comprised of 11 rare disease patient representatives who provide high level advice and strategic recommendations for the project.
- Patient input will be further ensured through several activities including through the definition of actionable diseases for genetic newborn screening with the help of the EURORDIS NBS Working Group and EURORDIS survey programme 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 EURORDIS Data and Digital Advisory Group (DAG).
- The participation of EURORDIS will also optimise communication and dissemination activities and maximise involvement of key stakeholders in Screen4Care.