Social Policy Advisory Group

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The Social Policy Advisory Group (SPAG), created in 2015, closely follows EURORDIS’ activities to promote the integration of rare diseases into social services and social policy.

The patient representatives in the SPAG provide grassroots experience on the social challenges experienced by patients and families and provide advice in relation to social policy, provision of social care and related issues (such as holistic care, social services, social innovation, disability, special education, psychological support). This helps to guarantee the formulation of patient-centric approaches to the different social challenges throughout the work of EURORDIS.

The SPAG is currently composed of 13 volunteer patient representatives and is led and supported by EURORDIS staff member Raquel Castro, Social Policy Senior Manager.

Name	Organisation	Country
Beata Boncz	HUFERDIS, Hungarian National Alliance for Rare Diseases	Hungary
Dorica Dan	RONARD - Romanian National Alliance for Rare Diseases	Romania
Giulia Mariani	Italian Tuberous Sclerosis Association	Italy
Gwenn Crohin	ALAN, Luxembourg National Alliance for Rare Diseases	Luxembourg
Isabel Fernandez	FEDER, Spanish Federation of Rare Diseases	Spain
Maria Montefusco	Former EUROPLAN advisor; Nordic Council for Welfare, Disability	Sweden
Nataliya Grigovora	Huntington Association Bulgaria	Bulgaria
Silvia van Breukelen & Ildiko Vajda	VSOP, Dutch Genetic Alliance	Netherlands
Stephanie Jøker Nielsen & Mette Grentoft	Rare Diseases Denmark	Denmark
Suzy Cooper	European Federation of Williams Syndrome	United Kingdom
Vlasta Zmazek	Croatian National Alliance for Rare Diseases	Croatia