The Voice of Rare Disease
Patients in Europe
PATIENTS, ORGANISATIONS, SERVICES
The EURORDIS Social Policy Advisory Group promotes the integration of rare diseases into social services & policies
Social Policy Advisory Group
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.
HUFERDIS, Hungarian National Alliance for Rare Diseases
RONARD - Romanian National Alliance for Rare Diseases
Italian Tuberous Sclerosis Association
ALAN, Luxembourg National Alliance for Rare Diseases
FEDER, Spanish Federation of Rare Diseases
Former EUROPLAN advisor; Nordic Council for Welfare, Disability
Huntington Association Bulgaria
Silvia van Breukelen & Ildiko Vajda
VSOP, Dutch Genetic Alliance
Stephanie Jøker Nielsen & Mette Grentoft
Rare Diseases Denmark
European Federation of Williams Syndrome
Croatian National Alliance for Rare Diseases