Beatriz Fernández Dominguez

Beatriz Fernandez is an economist with a specialization in International Negotiation. She has developed her career in the private as well the public sector, working as a consultant for companies and for governments. Her main skills have been to develop export strategies and international negotiations in the commercial field.
Beatriz’s life changed when her daughter Isabel was diagnosed with Tay-Sachs disease, a rare and terminal condition for which there was very little information and therapies in Spain. After meeting the research scientific team for a gene therapy at the University of Cambridge and the main patient organization in Europe, The CATS Foundation, she decided to create a similar organization in Spain. ACTAYS was established in 2014 in Madrid, and since then it has helped with the diagnosis of over 15 families in Spain and more in latin America. In 2015 ACTAYS created together with The CATS Foundation the first European Patient Registry for these diseases. In 2016 ACTAYS set up a new research project at the University of Seville, organized the first medical congress of theses diseases in Spain, and has recently created a scientific scholarship program for PhD students. It has cooperated with the arrangement of the European Family Conferences of the ETSCC. ACTAYS is a member of the Spanish Rare Disease Federation (FEDER), the Spanish Association of Fundraising (AEFr), the ETSCC and EURORDIS.

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