OD Expert Group

The multidisciplinary and cross-functional OD Expert Group brings together representatives of the broad rare disease community, including researchers, academia, patient representatives, members of the investor community, rare disease companies and trade associations. Our initiative is led by a steering group composed of EURORDIS, The Voice of Rare Disease Patients in Europe, and the European Confederation of Pharmaceutical Entrepreneurs (EUCOPE) representing companies focused on finding new therapies for rare disease. This Group aims to become the source of ground-breaking ideas and potential solutions that will provide input to the Orphan Medicinal Products (OMP) Regulation. The experts have worked together since 2020 and developed policy proposals throughout the entire OMP lifecycle: We are committed to three areas: research and development in therapeutic areas with currently no treatment or whose treatment needs improvement; regulatory pathways for orphan drugs; access.