Social Policy Advisory Group

Social Policy Advisory GroupThe 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.





Beata Boncz

HUFERDIS, Hungarian National Alliance for Rare Diseases


Dorica Dan

RONARD - Romanian National Alliance for Rare Diseases


Giulia Mariani

Italian Tuberous Sclerosis Association


Gwenn Crohin

ALAN, Luxembourg National Alliance for Rare Diseases


Isabel Fernandez

FEDER, Spanish Federation of Rare Diseases


Maria Montefusco

Former EUROPLAN advisor; Nordic Council for Welfare, Disability


Nataliya Grigovora

Huntington Association Bulgaria


Silvia van Breukelen & Ildiko Vajda

VSOP, Dutch Genetic Alliance


Stephanie Jøker Nielsen & Mette Grentoft

Rare Diseases Denmark


Suzy Cooper

European Federation of Williams Syndrome

United Kingdom

Vlasta Zmazek

Croatian National Alliance for Rare Diseases



Page created: 01/03/2016
Page last updated: 28/02/2018
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