Alba Ancochea

Alba Ancochea

FEDER - Federacion Española de Enfermedades Raras

e-mail: direccion@enfermedades-raras.org

enfermedades-raras.org

Alba Ancochea joined the EURORDIS Board of Directors in May 2017.

Alba has a decade of experience and commitment in implementing and planning policies, programs and socio-health projects in the field of rare diseases. Since 2009, she has been actively involved with the Spanish Federation of Rare Diseases (FEDER) and its Foundation, which gathers 338 patient organisations, and since 2013 is the organisation’s CEO. She  leads a team of more than 40 people who work to develop 25 specialised projects aimed at improving the quality of life of people living with a rare disease. FEDER has promoted the creation and activities of ALIBER, the Ibero-American Alliance of Rare Diseases.

Alba has completed undergraduate and masters studies in psychology, special needs teaching and management of NGOs.
Alba is a graduate of the EURORDIS Summer School and represents FEDER in Rare Diseases International and the EURORDIS Council of National Alliances. In addition she is a member of the Drug Information, Transparency and Access Task Force (DITA).

 
 
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