Congenital Hyperinsulinism International (CHI) Quarterly Update
At CHI, our mission continues to drive meaningful change for people with hyperinsulinism (HI) around the world. This past quarter brought major milestones in research, advocacy, and community connection; from an inspiring family conference to groundbreaking studies.
The Sweetest Event of the Year!
Skipping ahead to an upcoming event that we don’t want you to miss! The 12th Annual Sugar Soirée will be Saturday, November 15th, at The Highlawn in West Orange, NJ. The Sugar Soirée is a joyful celebration of the CHI community bringing together individuals, families, and leaders from across industries to raise critical funds for congenital hyperinsulinism research and support. Tickets are available through November 4th here.
This year’s programming will include a special premiere of our documentary film: “Turn Hours Into a Lifetime.” The film, made possible through the LightCure grant, follows the journeys of three HI families. This screening will be a moving testament to the diversity of the HI experience. We hope you can join us!
Research & Advocacy
Our Collaborative Research Network (CRN), made up of over 60 researchers and advocates from around the world, continues to advance HI science and advocacy. One example is the work of the Continuous Glucose Monitoring (CGM) group which is preparing a white paper. CHI remains active in the EU LightCure Consortium, expanding patient-powered research and awareness. Members of the CHI Research Team and CRN members also published a new research paper: “Real-world experience with the use of diazoxide among people living with congenital hyperinsulinism and their caregivers.” This mixed methods approach is the first of its kind that examines the experience of taking diazoxide, and centers the patient voice in conversation with traditional survey-based research. Read the full study in Frontiers and learn more on our blog.
EndoCompass Research Roadmap includes congenital hyperinsulinism. Five years ago, Congenital Hyperinsulinism International joined the Chan Zuckerberg Initiative’s #RareAsOne Network with a bold vision: to unite patient advocates, clinicians, and researchers in pursuit of better diagnostics, treatments, and cures for congenital hyperinsulinism
Today, with the publication of the EndoCompass Project: Research Roadmap for Diabetes, Obesity, and Metabolism, which includes a whole section on hyperinsulinism, we’re one giant step closer to that goal.
We’re especially proud that congenital hyperinsulinism is now a recognized research priority in Europe. EndoCompass is a project of ESPE – European Society For Paediatric Endocrinology and ESE – The European Society of Endocrinology. We are grateful for our incredible partners in pediatric endocrinology who embraced the patient-led prioritization process and included our community’s research and advocacy goals in this landmark roadmap.
Our scientific posters are now online! The CHI research team, with its partners, submits numerous abstracts to professional organization conferences throughout the year. These abstracts have been selected to be displayed at conferences as posters, predominantly to clinician and research audiences. By sharing them on our website, we are making them available to the entire CHI Community.
Family & Community
We were deeply saddened by the passing of Jim Nestor this September. Jim was a founding member of CHI and creator of the original Hyperins listserve in 1999. Jim’s legacy lives on in the congenital hyperinsulinism community he helped build and support. Read Julie Raskin’s touching tribute on our blog.
Thank you to the Nestor family for your continued support of Jim and CHI’s mission: to improve the lives of those in the hyperinsulinism community through research, awareness, and support.
The 2025 CHI Family Conference, held with The Children’s Hospital of Philadelphia, brought families and experts together for learning, connection, and support. This was the 9th time CHI patient advocates have partnered with CHOP hyperinsulinism experts to put on a CHI Family Conference. Learning through presentations and discussions is essential, but it is also just a part of what happens at a family conference; the conference also focused on providing the spaces and activities for HI community members to connect, share, and create lasting friendships.
Thank you to Dr. Diva De Leon-Crutchlow, CHOP HI Center staff, the LightCure grant, and our sponsors, Rezolute, Zealand, Hanmi, Rhythm, and Amidebio. Conference presentations and photos are available on our website, as well as blog posts by Julie Raskin and HI mom Marie-Claire.
Opportunities for HI families
Our CGM Access Program continues to provide monitors to U.S. families who otherwise lack access. While CGMs were originally developed for people with diabetes and are not currently approved for use in HI, many families in the HI community find CGMs useful for identifying glucose trends and detecting hypoglycemia in between glucometer checks, especially overnight. At this time, the program is only open to people with HI who live in the United States. Learn more or apply online to determine eligibility.
The HI Global Registry (HIGR) celebrates 7 years! HIGR, the only international patient registry for people with hyperinsulinism, has been an incredible resource to the HI community, clinicians, and researchers to better understand this rare disease, to provide better care, and eventually to improve treatment options. HIGR now has over 600 participants across eight languages. These contributions have supported seven peer-reviewed publications. Thank you to everyone for keeping your surveys up to date!
We’re also highlighting international voices like Martina, president of the Italian group Vivere con C.H.I., whose story underscores the importance of global participation and language inclusion in HIGR. Martina shared that the addition of Italian to HIGR’s survey platform “was a fundamental step to reach more families in Italy, enabling them to contribute their unique perspectives and experiences to the research. By breaking down the language barrier, we have ensured that the voices of Italian families are heard and integrated into the international research community.” More personal stories are available on our HI-Stories page.
Families can support research through current studies:
- Hanmi’s ACHIEVE Trial (long-acting glucagon-like treatment)
- Hamburg University Quality of Life Study
- CHOP Neurocognition Study
Thank You
Thank you for being part of our community and helping advance research, awareness, and support for people with HI worldwide.
Support our mission: improve the lives of people with hyperinsulinism.
With gratitude,
The CHI Team
Special thanks to our sponsors—Rezolute, Zealand, Hanmi, Rhythm, Amidebio—the EU LightCure grant, and foundation and individual donors for your continued support.
