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 voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases