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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.

12/17/2025

When Angela's sister Alina was born, what began as a joyous day “quickly turned into a nightmare.” At just 12 days old, Alina was diagnosed with congenital hyperinsulinism (HI), and her family traveled 2,500 miles for care.

Even with expert doctors, they felt lost ... until CHI connected them with a community that understood. “That connection changed everything,” Angela says.

Today, Alina is thriving at age 8, and her family has the tools and knowledge to navigate life with HI. 💙

Your gift makes stories like theirs possible. Join us in creating a future where HI no longer defines childhood.
👉 https://congenitalhi.org/donate/

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

12/16/2025

Show your support and raise awareness with CHI Juice Box merchandise! 🧃

We are thrilled to offer merchandise with our new, fun campaign slogan: "A Juice Box Saved My Life!" Our Bonfire site has shirts, hoodies, onesies, tote bags, and mugs, right in time for the giving season!

25% of merch sales will go to CHI. View the merch here: https://www.bonfire.com/store/congenital-hyperinsulinism-international/

Hyperinsulinism mom Brianna was inspired by her own daughter’s rescue treatment for hypoglycemia, the humble juice box. She shared her homemade shirt with the design “A Juice Box Saved My Life” on the front. Fellow HI mom Deepti turned that idea into a vibrant illustration for our community.

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

12/15/2025

🔁 Share this graphic to spread awareness of congenital hyperinsulinism and
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🔗 You can find CHI infographics and posters available in English, Spanish, French, German, Italian and Russian here: https://congenitalhi.org/chi-infographics/

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12/14/2025

12/13/2025

Family-Centered Research on Quality of Life in Families with Congenital Hyperinsulinism: “Light for double specificity and efficacy without burden: LightCure.”

The research team from the University of Applied Sciences in Hamburg, Germany invites hyperinsulinism (HI) families to take part in a study which aims to develop a patient-reported outcome measure to assess health-related quality of life in patients with congenital HI and their caregivers, as well as shared decision-making materials. Your experience can help improve care for people living with HI.

If you are interested, please email Dr. Stefanie Witt (stefanie.witt@haw-hamburg.de).

More information is available at https://congenitalhi.org/lightcure-quality-of-life-study/ 🔗

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

12/12/2025

Thank you to Este and Brianna for participating in the ! 🧃

Este and Brianna created the original "A Juice Box Saved My Life" shirt, inspiring a global awareness movement. For more information on this campaign and how to get involved, visit https://congenitalhi.org/juice-box-challenge/

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| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

12/11/2025

Rezolute Announces Phase 3 sunRIZE Study Results in Congenital Hyperinsulinism

The study did not meet its primary or secondary endpoints, which assessed change in the average weekly hypoglycemia events by self-monitored blood glucose and change in average daily percent time in hypoglycemia by continuous glucose monitoring (CGM).

The following is an excerpt from today’s press release from Rezolute: “There was an approximate 45% reduction in hypoglycemia events observed at the top ersodetug dose (10 mg/kg), which was not statistically significant compared to the placebo group, which experienced a 40% improvement. ... At the 10 mg/kg dose of ersodetug, an approximate 25% reduction in time in hypoglycemia was observed, which was not statistically significant compared to the placebo, which increased by approximately 5%.”

However, as Brian Roberts, M.D., Chief Medical Officer of Rezolute stated in today’s press release from Rezolute, “there are aspects of the results that merit additional investigation, and we are conducting a thorough evaluation to gain a better understanding of the study outcomes, which will inform our path forward. We intend to meet with FDA under our Breakthrough Therapy Designation to consider next steps for the program. We are deeply grateful to the patients and families, the majority of whom have continued into the open label extension part of the study, as well as to the investigators and site teams who participated in this important study.”

The full press release is available here: https://ir.rezolutebio.com/news/detail/368/rezolute-announces-phase-3-sunrize-study-results-in-congenital-hyperinsulinism

And a recording of the Rezolute conference call for more information is available here: https://ir.rezolutebio.com/events/detail/20251211-sunrize-topline-data-conference-call

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

12/11/2025

Meet Este.
When Este was diagnosed with HI, her family’s world changed overnight. Every meal, every activity became a balancing act. During dangerous lows, a simple juice box was their lifeline.

Inspired by this, Este’s mom, Brianna, created a shirt that read: “A Juice Box Saved My Life.” That message sparked a movement, reminding us that what seems ordinary can be extraordinary for families living with HI.

✨ Your gift can make a difference.
Every donation helps us provide resources to families and doctors, raise awareness, fund genetic testing, promote research, and support the advancement of new treatments that save lives.

No family should face HI alone.

Help us raise awareness, raise blood sugar, and raise hope.
👉 Donate today: congenitalhi.org/donate

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

12/10/2025

Over the last few days, Julie Raskin and Jennifer Schmitt had the opportunity to attend and exhibit at the Hot Topics in Neonatology Meeting in Washington, DC. They had many fantastic conversations with neonatologists from all over the world.

Neonatologists are doctors taking care of the littlest humans. Julie and Jennifer wanted to learn about the concerns of neonatologists who care for babies with hyperinsulinism while sharing CHI’s impactful programs including Glucose is a Vital Sign, an awareness campaign with the goal of screening every newborn with hyperinsulinism.

Julie was so fortunate to be able to sit down with NICU Doc Ben Courchia, host of the Podcast, The Incubator. Take a watch! https://youtu.be/tOYd4M7YaCI?si=5JElkWH-HwgrqfFQ

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

12/10/2025

At CHI, we strive for a future where the world (and Word/Google) will . ⁠
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Be a part of this groundbreaking patient-powered research and help researchers gain a fuller understanding of this complex rare disease. Join the HI Global Registry today at higlobalregistry.org⁠
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| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

12/09/2025

The Open Hyperinsulinism Genes Project: Providing genetic testing to 1137 individuals from 65 countries 🌍️🧬⁠
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In 2018, CHI teamed up with the University of Exeter Genomics Laboratory and the NHS National Hyperinsulinism genetics laboratory to establish a charity-funded testing service for those in need.⁠
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Through this initiative, we have turned constraints of limited resources into an advantage for scientific progress while improving the health of children worldwide. ⁠
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You can find additional details including contact and testing information here: https://congenitalhi.org/open-hyperinsulinism-genes-project/
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| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

12/08/2025

Happy tenth birthday to Asher! We hope that you have the best day! His mom sent us this sweet message: 🎉1️⃣0️⃣🎉 YEARS of the most wild adventure ever! Happy Birthday Asher! May your next adventure be the most thrilling and rewarding one yet!

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

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Glen Ridge, NJ
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Monday	8am - 6pm
Tuesday	8am - 6pm
Wednesday	8am - 6pm
Thursday	8am - 6pm
Friday	8am - 6pm

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http://congenitalhi.org/

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