Maria Montefusco

  • Officer

Maria Montefusco

Rare Diseases Sweden, Sweden

e-mail: maria.montefusco@eurordis.org

 

Maria Montefusco is the chairperson of Rare Diseases Sweden (2019–), a senior advisor for disability issues at the Nordic Welfare Centre, and the secretary at the Nordic Council of Ministers’ disability council.

With EURORDIS, she has sat on the board since 2020 and been a member of its Social Policy Action Group (formerly Social Policy Advisory Group) since 2015. Previously, she was a part of the expert group at the Swedish Infocentre for Rare Diseases (University of Gothenburg), which reported to the National Board of Health and Welfare. Maria has BAs in Political Science and Social Anthropology (Stockholm University), and a diploma in executive strategic project management from the Berghs School of Communication.

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases