Maria Montefusco

  • Officer

Maria Montefusco

Rare Diseases Sweden, Sweden



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.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases