The Social Policy Action Group (SPAG) will support EURORDIS’ work to shape policies and practices that improve the access of people living with a rare disease and their families to holistic care, and the guarantee of their social and human rights.
The SPAG will be composed of 10 to 15 volunteers, representing a diversity of European countries, rare diseases, disabilities, ages, and backgrounds. Its members will be individuals living with a rare disease, their family members, other rare disease representatives, and experts in social policy and human rights.
Applications closed on 1 November.
The SPAG will be established in December 2023, following a call for applicants launched in October.
Together we will:
- Raise awareness of the everyday needs and barriers faced by people living with rare diseases, including rare cancers, and their families.
- Ensure the formulation of person-centric approaches.
- Advocate for policies and services that address unmet needs and barriers to participation in society.
- Facilitate the participation of people living with a rare disease and their families in relevant consultations and bring their voice to specific projects.
- Empower the rare disease community to advocate for holistic care, and social and human rights.
Before applying, please read the Terms of Reference for the Social Policy Action Group.
Why is the SPAG important?
Most people who live with a rare disease face serious everyday challenges and many societal barriers, while also living with visible or invisible disabilities. Such barriers prevent people living with a rare disease and their families, often the main carers, from living more independently and from fully participating in various areas of society, while also exposing them to a high level of psychological, social and economic vulnerability.