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.

 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases