Begonya Nafria

Begonya Nafria is Patient Engagement in Research Coordinator at Sant Joan de Déu Children’s Hospital (Spain). She has long experience in the field of the involvement of patients and families in research initiatives. She has also a personal story as a caregiver and patient advocate because is the sister of a young adult with cerebral palsy. Her areas of expertise are focused on paediatric patients involvement in research and specifically in the field of clinical trials. Other relevant background of her profile is: 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 and Orphanet Journal of Rare.

Diseases, 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). Coordinator of the cross-cutting theme of patients involvement in Conect4Children project (pan-European paediatric clinical trials network) and participant of PARADIGM project, both funded by IMI. Coordinator of the Share4Rare project, funded by the European Commission (H2020) that has the aim to develop a digital platform addressed to improve the research in the field of rare diseases through the collective intelligence of patients and families (www.share4rare.org).