Coordinator, Share4Rare & Patient Engagement in Research Coordinator
Sant Joan de Déu Children's Hospital

Begonya is the Patient Engagement & Research Coordinator at Sant Joan de Déu Children’s Hospital in Spain. She has deep experience in the field of patient and family involvement in research initiatives, especially in the area of pediatric clinical trials. Her personal story as a caregiver and patient advocate for her sister, a young adult with cerebral palsy, drives her commitment to achieving a better quality of life for pediatric patients through research and new treatments.

Begonya is a Fellow of EUPATI (first cohort), Coordinator of eYPAGnet (European Young Patients Advisory Group Network – www.eypagnet.eu), Coordinator of Kids Barcelona (YPAG of Sant Joan de Déu Children’s Hospital- www.kidsbarcelona.org), member of Children’s Medicines Working Party of EFPGCP, volunteer member of the Editorial Board of Center for Information & Study on Clinical Research Participation (CISCRP), reviewer of Research Involvement and Engagement Journal, Chair of the Educational Committee of ICAN (International Children’s Advocacy Network) and member of the Patients and Families working group of EnprEMA (European Network of Paediatric Research of EMA). She is coordinator of the cross-cutting theme of patient involvement in the Connect4Children project (pan-European paediatric clinical trials network), and a participant in the PARADIGM project, both funded by IMI.

She is also a coordinator of the Share4Rare project, funded by the European Commission, (H2020) which has the aim of developing a digital platform to improve research in the field of rare diseases through the collective intelligence of patients and families (www.share4rare.org).