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Social Policy Action Group (SPAG)

Following the end of the mandate of the Social Policy Advisory Group (2015-2018), EURORDIS launched the Social Policy Action Group in April 2019. The EURORDIS Social Policy Action Group (SPAG) is an action group of volunteer patient advocates who disseminate and contribute to the positions of EURORDIS and its members, advocating for holistic and integrated care for people living with a rare disease and their families.

The Social Policy Action Group was preceded by the Social Policy Advisory Group, active from 2015 to 2018, with a mandate focused on “informing on patients’ and families’ social challenges and advising on social policy, provision of social care and related issues, guaranteeing the formulation of patient-centric approaches to the different social challenges”.

Name Organisation Country
Antonina Waszczuk Sanfilippo Initiative Germany
Dorica Dan RONARD Romania
Eleni Antoniou Thalassaemia International Federation Cyprus
Fabiola Bertinotti FSHD Europe Italy
Gábor Pogány HUFERDIS Hungary
Ivana Badnjarević NORBS Serbia
Maria Montefusco Rare Diseases Sweden Sweden
Patricia Arias FEDER Spain
Vlasta Zmazek Croatian National Alliance for Rare Diseases Croatia