After giving birth to two children with pathological idiopathic ketotic hypoglycemia (IKH), I took a Master’s in Anthropology of Health to support my passion for research, citizen science, patient empowerment and advocacy. After I found my son unconscious in bed due to severe hypoglycemia, I sensed the urgency for research into this field, and the need for better and more rapid technology currently available on the market. That night, the continuous glucose monitor (CGM) had failed to alarm, leaving my son at risk for the most devastating consequences of prolonged and undetected hypoglycemia.

This led to my first deep dive into medical literature, which shortly after got me to become involved in research with my children’s doctor, professor Henrik Thybo Christesen (SDU & OUH) and Professor Jacob Sten Petersen, Head of Stem Cell R&D at Novo Nordisk, associate professor at the University of Copenhagen. United, we founded the global organization Ketotic Hypoglycemia International (KHI) to foster the advancement of research into the etiology, prevalence, and management of idiopathic ketotic hypoglycemia.

From the very beginning parents and patients from all over the world worked closely with the Scientific Advisory Board on various patient/caregiver-initiated projects, based upon novel observations in the organization. Our work is an example of how a patient organization and medical experts can work together, connecting family representatives and experts from around the world. As the Executive Director of KHI, my work spans wide e.g., working on research protocols, medical publications, children’s books, conveying research, coordinating conferences, supporting patients in person and virtually, uniting medical experts from endocrinology and metabolism around the different projects, approaching policy issues, while also establishing (and maintaining) the collaboration between pharma, biotech, the medical experts, and the affected families.