Deputy General Secretary of EURORDIS-Rare Diseases Europe
Anna Arellanesová is the chairperson of Rare Diseases Czech Republic (2014 -), a Czech patient-led umbrella association for rare diseases. She is also a member of the board and former chairperson of the Czech Cystic Fibrosis Association.
Being in the role of a vice-chair of the newly – established Patient Council of the Ministry of Health, where she represents rare diseases she was able to participate in the creation of new legislation for an orphan drug reimbursement approval system, one which counts on the active participation of patients as decision makers. She is also a member of the working group for rare diseases at the Czech Ministry of Health. Thanks to our long-term cooperation with experts, she prepared and fulfilled the National Strategy for Rare Diseases as well as National Action Plans for Rare Diseases.
She has a bachelor’s degree in humanities from Charles University and lives in Prague.
e-mail: anickaarellanesova@gmail.com