I am so sad to share the news that Jim Nestor died last week, on September 10, 2025. His death is a huge loss, first and foremost for his family, and all his loved ones, but also for the congenital hyperinsulinism (HI) family community. It is like yesterday that I got a phone call from … Read more
Ben Raskin-Gross and Julie Raskin participated in Rare Across America initiative sponsored by the EveryLife Foundation. This initiative empowers advocates to meet with the staff of members of Congress at their local district offices. Ben and Julie shared their personal stories and advocated for issues of great importance for the congenital hyperinsulinism and broader rare … Read more
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 … Read more
Wishing everyone in the rare disease community a Happy Rare Disease Day! Today is Rare Disease Day and it is celebrated around the world on the last day of February. For those with rare diseases, Rare Disease Day is the most important day of the year. It is a day to celebrate everyone who has … Read more
On Tuesday, Tai Pasquini, CHI’s Chief Research Officer attended the Pediatric Inclusion Roundtable: Effective Inclusion of Children Early in Clinical Trials in Washington, DC. The event was hosted by FARA, a rare disease patient organization, and Leavitt Partners, a law firm, along with stakeholders across the rare disease community. Prominent leaders from the FDA, NIH, … Read more