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.

 

 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

 

Social Policy Action Group

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.

 Name

Organisation

Country

Ainhoa May

FEDER

Spain

Antonina Waszczuk

Sanfilippo Initiative

Germany

Dorica Dan

RONARD

Romania

Eleni Antoniou

National Alliance for Rare Disorders

Cyprus

Fabiola Bertinotti

FSHD Europe

Italy

Gábor Pogány

HUFERDIS

Hungary

Ivana Badnjarević

NORBS

Serbia

Maria Montefusco

Rare Diseases Sweden

Sweden

Nataliya Grigovora

Huntington Association Bulgaria

Bulgaria

Patricia Ribeiro

ALAN

Luxembourg

Vlasta Zmazek

Croatian National Alliance for Rare Diseases

Croatia

 

Page created: 01/03/2016
Page last updated: 16/04/2019
 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases