Anna Arellanesová

Anna Arellanesova

Chair, Rare Diseases Czech Republic

e-mail: arellanesova@vzacna-onemocneni.cz

www.vzacna-onemocneni.cz

 

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.

 
 
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