52 Heroic doctors, brilliant researchers, courageous parents, and a brave adult with HI spent two days in Lisbon, Portugal from February 28-March 2 working intently on making the future better for people with hyperinsulinism. The CHI Collaborative Research Network is a dynamic international collaboration of researchers, clinicians, and expert patient and caregiver advocates working together to accelerate hyperinsulinism research and access to currently available treatments and diagnostics.
15 countries and five continents were represented at the meeting in Lisbon and important progress was made on how to fill gaps in knowledge, research, and advocacy in these five areas: Universal newborn screening for congenital hyperinsulinism, Care guidelines and centers of excellence, Glucose monitoring, Raising awareness of hyperinsulinism and increasing access to care, and Improving neurological outcomes in people with congenital hyperinsulinism. The 52 CRN members were divided into small groups focused on these topics, and using the CHI CRN prioritized research agenda developed in 2022 as their guide discussed the important work that would need to take place throughout 2025 to reach their goals.
There was a level-setting presentation from an inspiring parent on the research needs of the patient community from her perspective, outstanding presentations on congenital hyperinsulinism research taking place all over the world, as well as a profound “Voice of the Patient” report. There was also a report from CHI on all the progress that has been made by CRN members. Since the CRN met last year 56 peer-reviewed manuscripts have been published in the medical literature, with 11 of these authored through CRN partnerships across institutions. There have also been great successes six different biotechs developing new treatments, as well as a new partnership formed with a glucose monitoring company that will lead to a better understanding of continuous glucose monitoring (CGM) in people with HI and increased access to CGM. The patient advocacy organization members have all made great progress in supporting families affected by congenital hyperinsulinism.
The CHI CRN was made possible by a 2020 capacity building grant from the Chan Zuckerberg Initiative’s Rare As One Network. Since 2023, the CRN has been funded by individual donors to CHI, family foundations, and sponsorships from biotechs.
Five years in, I only wish CHI would have had the opportunity to create the CRN years earlier. However, regret is not a way to move forward. Instead, my personal goal is to accelerate the progress of the CRN by continuing to find ways to increase its support. In this way, breakthroughs that are life-changing to individuals with hyperinsulinism will happen sooner rather than later.
