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EURORDIS launches the Social Policy Action Group (SPAG)

enero 2024

EURORDIS has today launched the Social Policy Action Group (SPAG). The purpose of the SPAG is to support EURORDIS’ work to shape policies and practices that improve access to holistic care, and guarantee social and human rights for individuals living with rare diseases and their families.

The SPAG is composed of 20 volunteers, representing 13 European countries and a range of rare diseases, disabilities, ages, and backgrounds. Its members are individuals living with a rare disease and family members, some of whom are also experts in social policy and human rights.

Recruited through an open call for applicants, the new SPAG members are passionate advocates ready to contribute their knowledge and experience to supporting EURORDIS’ advocacy and initiatives on holistic care, social, and human rights.

Speaking about joining the SPAG, new member Jakub Gietka said:

Joining SPAG is a deeply personal journey for me, intertwining my professional dedication with my personal mission to advocate for those living with rare diseases. Through SPAG, I am committed to making a tangible difference, fostering awareness and shaping a brighter future for the rare disease community.

Jakub Gietka, Founder and President, Aiming For The Future Foundation, Poland

The SPAG boasts a diverse range of backgrounds in order to gather an array of perspectives and reflect different needs of the rare disease community. Jakub is one of several SPAG youth members living with a rare disease; he is joined by Adèla Odrihocká, Alba Parejo, and Jurn Anthonis, bringing unique outlooks and a vitality to the group.

As one of my primary areas of interest is the social aspect of living with rare diseases and disabilities, an often overlooked topic in discussions, I am delighted to be able contribute in this area. Our group will help improve the access of individuals with rare diseases and disabilities and their families to comprehensive care, social support, and human rights.

Adéla Odrihocká, advocate, Czech Republic

Key Objectives of the SPAG

  • Policy Shaping: The SPAG actively contributes to the development of policies that enhance the well-being of people living with rare diseases and their families. It will also work to ensure the formulation of person-centric approaches.
  • Advocacy: Advocating for policies and services that address unmet needs and barriers to participation in society. 
  • Participation: Facilitating the participation of people living with a rare disease and their families in relevant consultations and bring their voice to specific projects
  • Social and Human Rights: The SPAG will work tirelessly to support EURORDIS’ work to safeguard the social and human rights of individuals with rare diseases.
  • Raising Awareness: Highlighting the everyday needs and barriers faced by people living with rare diseases, including rare cancers, and their families
  • Empowerment: The SPAG will build the capacity the rare disease community to advocate for holistic care, as well as social and human rights.

Discover more about SPAG’s mission and its dedicated members by visiting the group’s webpage.

The SPAG held its inaugural meeting on 17 January to discuss the new project. It was an exciting opportunity for all involved to kick off discussions and dive into the important work ahead.

Felix Allan, Communications Intern