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Social Policy Action Group (SPAG)

The Social Policy Action Group (SPAG) supports 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 is composed of 20 volunteers, representing 13 European countries and a diversity 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.

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.

The SPAG supports EURORDIS’ work to change that and to progress towards a world where all people living with a rare disease can achieve their full potential, in a society that leaves no one behind.

Find out more about the SPAG in its Terms of Reference, published within the EURORDIS By-Laws.

SPAG members

Adéla OdrihockáCzechiaČAVO, Rare Diseases Czech Republic
Alba ParejoSpainAsoNevus
Caroline RoattaFranceAssociation Bernard Pépin pour la maladie de Wilson
Charissa – Vlaamse Vereniging voor Erfelijke
Claudio PirolaItaly, SwedenDysNet-Dysmelia Network
David RossUnited KingdomRare Disease Male Mental Health Support Group
David SanchezSpainRetina Murcia; FEDER – Federación Española De Enfermedades Raras
Dorica DanRomaniaRONARD – Romanian National Alliance, Romanian Prader-Willi Association
Jakub GietkaPolandFundacja Celując w Przyszłość – Aiming for the Future Foundation
Jennifer ReyesFrance, USAAssociation La Maison 8p
Jurn AnthonisBelgiumVereniging voor Spina Bifida & Hydrocephalus vzw
Kirsty HoyleUnited KingdomMetabolic Support UK
Marco SessaItalyAssociazione per l’Informazione e lo Studio dell’Acondroplasia
Nicole FaccioUnited Kingdom, USA
Oleksandra OliinykUkraineUNICEF Ukraine
Oriana SousaPortugalChildhood Cancer International (CCI) Europe; EU Network of Youth Cancer Survivors
Petra BrügmannGermanyEuropean MEN Alliance e.V.
Teresa PaisPortugal, AustriaChildhood Cancer International (CCI) Europe
Veronique Van AsscheBelgiumSMA Belgium; SMA Europe
Zhana ChokheliGeorgiaSCN2A GEORGIA

The mandate of these SPAG members is of 3 years, from January 2024 to December 2026.