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Congenital Hyperinsulinism International

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Glen Ridge, NJ
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.

08/09/2025

There’s a simple way to support hyperinsulinism research!

"Pairing Dexcom with HIGR was easy peasy. We are happy that we can help this small community of "unpredictable sugars" with our child's data."

Sharing your glucose values helps HI researchers understand the unique glucose patterns in people with HI.

Visit higlobalregistry.org to log in and start sharing your glucometer and/or continuous glucose monitor (CGM) values.

Reminder: Your data is always de-identified in all reporting and research.

Not registered yet? It’s not too late to contribute your experiences to HI research! Learn more at higlobalregistry.org at the link in our bio and sign up today.

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/08/2025

Thanks, Aliesha for sharing this quote! CHI is grateful to have a community of patients, patient families and friends, physicians, researchers, and staff working to improve the lives of people with HI around the world.⁠
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Do you have a quote and photo to share? Sharing a piece of your story helps us continue to raise awareness and build our HI community. DM us or email lbarnett@congenitalhi.org.⁠

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/07/2025

to our sweet 2024 back-to-school submissions! 🔁🏫 ✏️

Do you have a first day of school photo you'd like to share with us? DM us or email Lbarnett@congenitalhi.org with a photo to wish your SWEET kiddo a happy back-to-school! 🖍️⁠

08/06/2025

‼️ Fact: Congenital hyperinsulinism is the most frequent cause of severe, persistent hypoglycemia in newborn babies and children.

📣 Learn the signs and symptoms of hypoglycemia and spread the word.

🔁 Our "What is hyperinsulinism" posters can raise awareness of congenital hyperinsulinism and the signs and symptoms of hypoglycemia. We encourage you to print and share these with hospitals, physicians, friends, family, schools, or daycares. 🌎️⁠ These posters are available in 24 languages at https://congenitalhi.org/chi-posters/

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/05/2025

CHI continues to raise awareness about HI to the broader academic/scientific and advocacy community!

In May, CHI attended the European Society for Pediatric Endocrinology (ESPE) meeting in Copenhagen, Denmark, where we had three posters accepted!

CHI also presented a Voice of the Patient Session where Julie Raskin and Lauren Lopez were joined by Dr. Nino Khedlaze, Dr Sarah Flanagan, and Dr. Henrik Christesen to share experiences regarding Global Access to Hyperinsulinism Care to a full house.

Read more about this exciting meeting and watch a video of the presentation: https://congenitalhi.org/summer-2025-2nd-quarter-newsletter/ 🔗

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/04/2025

What’s your glucose story?

Share your glucose values to help HI researchers understand the unique glucose patterns in people with HI!

Visit higlobalregistry.org to log in and start sharing your glucometer and/or continuous glucose monitor (CGM) values.

Reminder: Your data is always de-identified in all reporting and research.

Not registered yet? It’s not too late to contribute your experiences to HI research! Learn more at higlobalregistry.org and sign up today.

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/03/2025

08/02/2025

Connect with HI families in Philadelphia this October!

Our next Family Conference, with the Congenital Hyperinsulinism Center at the Children’s Hospital of Philadelphia (CHOP), will take place October 3-5, 2025.

A hyperinsulinism parent shared with us that "one of the best parts of coming to these events is watching the kids become fast friends. They get to hang out with other kiddos that understand them on another level."

Registration, scholarship, and scheduling information are available at https://congenitalhi.org/2025-congenital-hyperinsulinism-family-conference-in-philadelphia/

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

08/01/2025

07/31/2025

You or someone you love could be part of developing new therapies for congenital hyperinsulinism. ⁠
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The ACHIEVE clinical trial is seeking children and adults with congenital hyperinsulinism for participation. The study is evaluating a long-acting investigational drug that acts like glucagon in the body to maintain blood sugar levels. Dosing is only required once per week. During the study qualified participants will be provided with a continuous glucose monitoring system, glucometer, and patient diary. ⁠
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Visit http://ACHIEVE.study for more information. ⁠

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07/30/2025

What began in 2005 as a small gathering of parents has grown into a powerful, international movement — and it’s all thanks to our incredible supporters. 💙 ✨️
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Join us on Saturday, November 15th at the beautiful Highlawn Pavilion in West Orange, New Jersey for a magical evening celebrating the HI community and raising funds to improve life with HI.⁠
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Be part of this special night filled with inspiration, community, and hope. We can’t wait to see you there!⁠
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More details to come! Tickets are available for purchase now at https://congenitalhi.org/2025-sugar-soiree/
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| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

07/29/2025

Her son's glucometer can power hyperinsulinism (HI) research.

The HI Global Registry (HIGR) can now collect glucometer data. Connect your glucometer today! ⁠
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What is the HI Global Registry (HIGR)? It’s the only patient-powered registry for hyperinsulinism (HI)—driven by YOU to advance HI research! ⁠ ⁠
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Not registered yet? It’s not too late to share your experiences and make a difference! Learn more at higlobalregistry.org and sign up today. ⁠
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| 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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