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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.
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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.

08/30/2026

Do continuous glucose monitors (CGMs) impact hyperinsulinism (HI) care?

✅ Among participants currently using a CGM:
🔹 82% reported that CGM data led to adjustments in their treatment plan (e.g., medication dose/timing, prescribed feeding schedule) and/or daily routine (e.g., snack before activity, avoiding certain activities).

✅ Hypoglycemia prevention actions:
🔹 84% take at least one preventive action every day (e.g. eating food and/or taking medication to prevent a low)
🔹 40% report an average of four or more preventive actions daily

These findings show how CGMs can play a key role in managing HI and preventing dangerous lows.

These insights and more are featured in our 2025 HI Global Registry Annual Report, available at https://congenitalhi.org/higr-annual-reports-and-publications/

What is HIGR? It’s the only patient-powered hyperinsulinism (HI) registry, and your input drives critical research.

Not registered yet? It’s not too late to share your experiences and feel the power of your data! Learn more at higlobalregistry.org at the link in our bio and sign up today.

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/29/2026

“It was so easy to connect, and I'm excited to know that my son's Dexcom data will help make the case for getting all HI kids access to a CGM.

Having a Dexcom has made his blood sugar management so much easier for us, and I know his data will demonstrate how our kids are unique and need this technology.” ⁠
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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

08/28/2026

Every hour matters when severe hypoglycemia goes undetected.

In Turn Hours Into a Lifetime, CHI and the creative team at Wolfstreet share the real-life experiences of three families affected by hyperinsulinism from around the world. Their stories demonstrate why early diagnosis, access to treatment, and greater awareness are critical for protecting lives and preventing avoidable brain injury.

We are proud to share this film and thankful to the LightCure Grant and the European Union for supporting this work.

🎥 Watch the documentary on this post or at our YouTube page: https://youtu.be/CCiqYVP6PWc?si=7ywBRQg9Rhz6OK7N

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/28/2026

Next week, Congenital Hyperinsulinism International will welcome families, clinicians, researchers, advocates, and partners from around the world to Marseille, France for a three-day Congenital Hyperinsulinism Family Conference.

Rezolute is honored to support and attend this important event, which provides a meaningful opportunity to make connections, learn about the latest in hyperinsulinism care, and show support for an incredible community.

Learn more: https://bit.ly/3SvUfyu

08/27/2026

Last chance to register for our upcoming Family Conference! 💙

Families, advocates, researchers, and healthcare professionals from around the world will come together for three days of learning, connection, and community. ✨

📍 Marseille, France
🗓️ September 4-6, 2026

🔗 Learn more and register:
https://congenitalhi.org/2026-family-conference-in-marseille/

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/26/2026

✨ Join us for an unforgettable evening of celebration, community, and hope at the 2026 Sugar Soirée, Congenital Hyperinsulinism International's signature annual fundraising event.

On November 21, 2026, the HI community, families, supporters, clinicians, researchers, and advocates will come together at The Highlawn in West Orange, NJ, to support a brighter future for everyone affected by congenital hyperinsulinism.

Every ticket helps advance HI awareness, research, advocacy, and access to care for babies, children, and adults living with HI. 💙

🎟️ Reserve your seat today: https://congenitalhi.org/2026-sugar-soiree/

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| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/25/2026

The exclusive CHI Giro del Vino IX jersey is now on sale, but only until August 27! Whether you're participating in Giro del Vino IX or cheering from home, this unique jersey is a fantastic way to promote awareness of congenital hyperinsulinism and demonstrate your solidarity with families impacted by HI.

💙 Features the logo of jersey sponsor Rezolute 💙 20% of every jersey purchase benefits CHI 💙 Available in multiple styles and fits

Don't miss your chance to own this special-edition jersey before the team store closes next week!

https://teamstore.pactimo.com/fe/stores/congenital-hyperinsulinism-international/show

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/25/2026

Happy 3rd birthday to Niccolò! 🥳 CHI hopes you have a terrific day! 🎈

We received this sweet message from his mother:

Happy birthday to our brave little warrior—you teach us something new every day and show us that life is wonderful just as it is.
May life always smile upon you, just as you smile at the whole world; we love you so much! ❤️

Original Italian:
Tanti auguri al nostro piccolo grande guerriero che ogni giorno ci insegni qualcosa di nuovo e ci dimostri che la vita è fantastica così com’è.
Che la vita ti sorrida sempre così come te sorridi al mondo intero, ti amiamo tanto! ❤️

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/24/2026

❗️ Recurrent hypoglycemia in newborns, infants and children is not normal. Learn the signs & symptoms of hypoglycemia to prevent brain damage and death.⁠
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🔁 Share this graphic to spread awareness of the dangers of hypoglycemia. ⁠
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🔗 You can find CHI infographics at https://congenitalhi.org/chi-infographics/ and posters at https://congenitalhi.org/chi-posters/

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/23/2026

Your voice matters.
Rezolute’s VOICE study is listening to individuals and families affected by congenital hyperinsulinism (cHI). By sharing your experience, your insights will:

- Quantify the burden of disease
- Address critical gaps in knowledge
- Advance care, improve awareness, and support potential access to future treatment options

🗣️ Be heard. Be part of the change.
🔗 Sign up at the updated link and share your story: https://sheconsulting.qualtrics.com/jfe/form/SV_9HVr5FoWE9t6dRc

| 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

Website

http://congenitalhi.org/

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