Congenital Hyperinsulinism International

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Congenital Hyperinsulinism International CHI is dedicated to improving the lives of people living with Congenital Hyperinsulinism.

CHI supports the greater congenital hyperinsulinism (HI) community by providing educational and support activities (such as conferences and forums), and representing our community’s interests. CHI is guided in its activities by an outstanding scientific advisory group which includes the leading HI clinicians and researchers.

🎟️ Tickets are on sale for the 2026 Sugar Soirée! ✨️Join us on November 21, 2026, at The Highlawn in West Orange, NJ, fo...
10/12/2026

🎟️ Tickets are on sale for the 2026 Sugar Soirée! ✨️

Join us on November 21, 2026, at The Highlawn in West Orange, NJ, for an unforgettable evening celebrating the congenital hyperinsulinism community while raising critical funds to support awareness, research, advocacy, and care for people living with HI. Together, we can help create a future where no one faces HI alone.

Our nearby hotel room blocks are also now open! Secure your spot today: https://congenitalhi.org/2026-sugar-soiree/ 🌟


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

“Rosey has been using a Dexcom G7, linked to her Apple Watch, so she can easily monitor her own glucose levels, which al...
10/11/2026

“Rosey has been using a Dexcom G7, linked to her Apple Watch, so she can easily monitor her own glucose levels, which also helps her parents monitor trends while she is away from home.

Connecting her Dexcom readings to her account on the HI Global Registry was very straightforward and took only a couple of minutes, and once set up, continues until we would cancel it. We upload her handheld glucometer data monthly, which also only takes a couple of minutes each month.

It is meaningful for Rosey to feel like she is helping to contribute to our shared knowledge and potential solutions!”

Sharing your glucose values helps HI researchers understand the unique glucose patterns in people with HI. ⁠
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Visit higlobalregistry.org to log in and start sharing your glucometer and/or continuous glucose monitor (CGM) values. ⁠
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Reminder: Your data is always de-identified in all reporting and research. ⁠
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Not registered yet? It’s not too late to contribute your experiences to HI research! Learn more at higlobalregistry.org and sign up today. ⁠
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| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Still reminiscing about the Giro del Vino IX last Sunday! Thank you to all of the cyclists, volunteers, donors, sponsors...
10/10/2026

Still reminiscing about the Giro del Vino IX last Sunday! Thank you to all of the cyclists, volunteers, donors, sponsors, and supporters who made this event such a success! Scroll through to see photos from last weekend - more coming soon! 👀


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

10/09/2026

Behind every diagnosis is a family, a journey, and a story worth sharing.

Meet Lena and her mom, Wendy. Lena was diagnosed with hyperinsulinism early, and after some difficulty finding the correct diet and treatment, she grew out of the condition by the time she was 7 years old. This short film offers a more intimate look at their story, featured in Turn Hours Into a Lifetime. In this piece, we follow Lena’s journey, focusing on the moments, memories, and motivations that have shaped her family’s experience with hyperinsulinism.

Created as a companion to the full documentary, the short invites viewers to slow down, listen closely, and connect more deeply with the heart of this story.

As part of our participation in the LightCure project, CHI partnered with a creative team from Wolfstreet to produce Turn Hours Into a Lifetime, a documentary short film that brings visibility to the realities of congenital hyperinsulinism. The film shares the experiences of three different families from around the world, underscoring the critical importance of recognizing and treating severe hypoglycemia early to prevent brain injury and loss of life.

We are deeply grateful to the LightCure Grant and the European Union for making this film and collaboration possible.


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

We're delighted to share "The Very Best You: For Young Warriors of Rare Diseases and Abilities" by Angela Panayotopulos,...
10/08/2026

We're delighted to share "The Very Best You: For Young Warriors of Rare Diseases and Abilities" by Angela Panayotopulos, a hyperinsulinism mom in Greece.

Inspired by her son's congenital hyperinsulinism journey, this heartwarming story follows Constantine, a young bunny learning that being different is something to celebrate. Through kindness, courage, and hope, The Very Best You helps children and families embrace what makes them unique while opening the door to important conversations about rare diseases and different abilities. 🐇💙

📚 Available on Amazon
🎧 Also available as an audiobook narrated by Angela

Access both here: https://congenitalhi.org/chi-materials-for-kids/


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Couldn't make it to the CHI Family Conference in Marseille this September? You can still be part of the experience!Many ...
10/07/2026

Couldn't make it to the CHI Family Conference in Marseille this September? You can still be part of the experience!

Many of the conference presentations are now available on our website, covering the latest in HI research, care, and community updates.

View presentations: https://congenitalhi.org/presentations-from-the-2026-family-conference-in-marseille-france/

Explore conference photos: https://congenitalhi.org/2026-family-conference-in-marseille/


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Last week, CHI was honored to attend the Children's Hospital of Philadelphia (CHOP)'s Topics in Hyperinsulinism symposiu...
10/06/2026

Last week, CHI was honored to attend the Children's Hospital of Philadelphia (CHOP)'s Topics in Hyperinsulinism symposium, where clinicians, researchers, and industry partners from around the world came together to share progress, challenges, and opportunities in congenital hyperinsulinism (HI).⁠
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We were proud to contribute to the event with a presentation by Chief Research Officer Tai Pasquini on Misdiagnosis and Diagnostic Delays in Congenital Hyperinsulinism, drawing on data from the HI Global Registry (HIGR). CHI staff also shared two research posters focused on the impact of subtotal pancreatectomy and advancing continuous glucose monitoring for children and young people with HI.⁠
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It was inspiring to see HIGR data and the impact of the CHI Collaborative Research Network (CRN) recognized across multiple presentations as the community works together to improve diagnosis, treatment, and outcomes for everyone affected by HI.⁠
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All CHI scientific posters are available here: https://congenitalhi.org/scientific-posters/
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| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

📢 Encouraging news for the HI community! Rezolute announced that the FDA has recommended a pre-BLA meeting before they s...
10/05/2026

📢 Encouraging news for the HI community!

Rezolute announced that the FDA has recommended a pre-BLA meeting before they submit a Biologics License Application (BLA) for ersodetug, a potential treatment for congenital hyperinsulinism (HI).

What does this mean?
👉️ A BLA is the formal application a company submits to the FDA asking for approval to market a medicine.
👉️ A pre-BLA meeting is an important step in that process, giving Rezolute and the FDA an opportunity to review the data and discuss what will be needed for a full application.

The FDA’s recommendation for Rezolute to move forward with a pre-BLA meeting signals that the FDA believes the data from the Phase 3 trial deserves further review and consideration through the application process for drug approval.

"The FDA has reviewed the data and, despite the trial’s failure to meet the prespecified primary and key secondary endpoints, as a next step, encouraged Rezolute to request a Type B pre-BLA meeting as a precursor to submitting a BLA for congenital HI. The FDA explicitly did not opine on the approvability of ersodetug for congenital HI and noted that any such determination would only be made as a part of an in-depth evaluation of the supporting data during a formal BLA review, as is customary during a BLA process."

For families affected by HI, this represents another meaningful step toward the possibility of new treatment options. We are grateful to the patients, families, researchers, clinicians, fellow advocacy organizations, and industry partners whose dedication makes progress like this possible. 💙

Read more: https://ir.rezolutebio.com/news/detail/385/rezolute-announces-fda-recommendation-to-hold-a-pre-bla-meeting-as-a-precursor-to-submitting-a-biologics-license-application-bla-for-congenital-hyperinsulinism


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Thank you to our sponsors for making the Giro del Vino IX possible today! 🚴🍷We are so grateful for your support, volunte...
10/04/2026

Thank you to our sponsors for making the Giro del Vino IX possible today! 🚴🍷

We are so grateful for your support, volunteering your time, and your generous donations of supplies. 🫂

And a special thank you to Jorge Carmona of the TnT Cycling Club of New Jersey for your expertise in planning this event and for all of the time you have dedicated to making the day such a success. 💙


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Can't make it to the Giro del Vino IX fundraiser this Sunday? 🚴🍷 You can still support CHI from your home!Visit this lin...
10/03/2026

Can't make it to the Giro del Vino IX fundraiser this Sunday? 🚴🍷 You can still support CHI from your home!

Visit this link to view all the ways you can contribute to our programs benefitting people with hyperinsulinism: https://congenitalhi.org/donate/

We are so grateful for your support! 💙

And if you're interested in learning more about the event, please visit https://congenitalhi.org/2026-giro-del-vino-bike-ride/


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Address

Glen Ridge, NJ
07028

Opening Hours

Monday 8am - 6pm
Tuesday 8am - 6pm
Wednesday 8am - 6pm
Thursday 8am - 6pm
Friday 8am - 6pm

Telephone

+19735448372

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