Panel Discussion
Begonya Nafria is Head of Department at Sant Joan de Déu Chidren’s Hospital (Spain). She has long experience in the field of patient and family involvement in research initiatives. She has also a personal story as a caregiver and patient advocate because she is the sister of an adult with cerebral palsy.
Her areas of expertise are paediatric patient involvement in research, and specifically in the field of clinical trials. She is currently a PhD student focusing on children’s rights with respect to their participation in clinical studies.
Other relevant background of Begonya’s profile includes: Fellow of EUPATI (first cohort), Coordinator of eYPAGnet (European Young Patients Advisory Group Network – www.eypagnet.eu), Coordinator of Kids Barcelona (www.kidsbarcelona.org), member of Children’s Medicines Working Party of EFPGCP, chair of the working the working group of cross-border access to clinical trials at EmprEMA, and member of the EUPATI Board.
Coordinator of the cross-cutting theme of patients’ involvement in Conect4Children project (pan-European paediatric clinical trials network).
Bojana Mirosavljevic is the Director of Patient Advocacy Strategy at ICON, and has 15+ years of Rare Disease Patient Advocacy Strategy experience focused on the clinical development process. Bojana has extensive experience in creating and implementing Patient Advocacy strategies for rare diseases in pharma and contract research organisations (CROs). Bojana is a chemist and embryologist specialised in pre-implantation genetic testing (PGT).
Bojana is the Founder and President of ZIVOT (LIFE), a Patient Organisation operating in Serbia and the Balkan region. She successfully lobbied for Zoya’s law, which increased access to early diagnostic and newborn screening in Serbia. She is a certified EUPATI Patient Expert for Rare Diseases and was a recipient of the prestigious EURORDIS Black Pearl Award.
Dr Sarah Milner is an experienced clinical and regulatory medical writer. Over the last 15+ years, she has provided medical writing, training, and consulting services to the pharmaceutical industry. Sarah has particular interest in the rare disease space, especially in paediatrics, and is a passionate patient advocate.
Ms Francesca Buttigieg is an experienced Regulatory Affairs Director with a demonstrated history of working in the pharmaceutical industry, and is skilled in Global Drug Development, Regulatory Requirements, and Regulatory Strategy.
Dr. Karen Hinkle has been a medical writer with the Lay Language & New Media team at Boehringer Ingelheim for 2.5 years. Previously, she was a biology professor, researcher, and administrator at Norwich University, a comprehensive liberal arts academic institution in Vermont, USA. It was as a biology professorship where Karen’s passion for deconstructing technical information to plain language was born. At Boehringer, Karen continues this work through developing regulatory plain language documents for clinical trials, including lay summaries, informed consent forms, paediatric assent forms, lay protocol synopses, brief summaries, and others. She also oversees the development of the company-wide plain language glossary. Karen is an active member of AMWA and presented information about the glossary at the national conference in October, 2024, in New Orleans, LA, USA.
Dr. Sebastian Florescu is also a Lay Language & New Media Medical Writer at Boehringer Ingelheim, where he has worked for about 4 years. With a PhD in cancer biology from the German Cancer Research Institute, Sebastian combines his scientific expertise with a passion for plain language writing and visual communication. He authors lay regulatory documents, including brief summaries, lay protocol synopses, informed consent forms, and lay summaries of study results. Sebastian is dedicated to making complex scientific information accessible and engaging for patients and the public. He also supports the development of digital solutions that enhance clinical development and communication. An active member of EMWA, Sebastian is committed to improving the clarity and accessibility of clinical trial information through innovative approaches.