The over 400 volunteers involved in EURORDIS activities play a crucial role in raising awareness and shaping policy that benefits everyone living with a rare disease and their families.
All EURORDIS volunteers adhere to the EURORDIS Charter of Volunteers.
Bringing together 300+ patient representatives from 28 European countries, the European Patient Advocacy Groups (ePAGs) represent the patient voice in the European Reference Networks (ERNs).
The SPAG (Social Policy Action Group) advocates for better access to holistic care, and the guarantee of social and human rights
The Drug Information, Transparency and Access Task Force (DITA) focuses on the areas of product information, transparency of the regulatory process and access to medicines.
The Newborn Screening Working Group (NBS-WG) develops principles for harmonious uptake of the NBS programs across the Member States.
The HTA Task Force facilitates the participation of patients in health technology assessment activities.
The Rare Disease Day Working Group co-creates the annual global campaign.
The Therapeutic Action Group (TAG) is composed of EURORDIS volunteers in the scientific committees and working parties at the European Medicines Agency (EMA).
MoCA provides a mechanism for European countries to collaborate on coordinated access to orphan medicines in a voluntary, dialogue-based approach, intended to create a fluid set of interactions between key stakeholders, across all aspects of a product.
If you are interested in learning more about EURORDIS volunteers contact eurordis@eurordis.org.