Congenital Hyperinsulinism International

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.

Your voice matters. Rezolute’s VOICE study is listening to individuals and families affected by congenital hyperinsulini...
04/02/2026

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 and share your story: https://sheconsulting.qualtrics.com/jfe/form/SV_0di6JvAr62rDQDc

Your voice matters. Help us understand and quantify the burden of cHI.

CHI wishes our Jewish community a joyous Passover!⁠⁠⁠ ⁠| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare...
04/01/2026

CHI wishes our Jewish community a joyous Passover!⁠
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⁠| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Who has a birthday 🥳 in April? CHI wants to give all our April babies a birthday shout-out! 🎈🎉 Send your birthdate, phot...
04/01/2026

Who has a birthday 🥳 in April? CHI wants to give all our April babies a birthday shout-out! 🎈🎉 Send your birthdate, photo, and a short message to lbarnett@congenitalhi.org or DM us!⁠ ⁠🎂⁠
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| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

We’re honored to see Julie and Ben's story—and our mission—featured in New Jersey Monthly. 💙This article highlights CHI'...
04/01/2026

We’re honored to see Julie and Ben's story—and our mission—featured in New Jersey Monthly. 💙

This article highlights CHI's co-founder and CEO, Julie Raskin, and the journey she began alongside her son Ben after his diagnosis with congenital hyperinsulinism (HI). Their experiences, along with those of other families who were originally part of an email list, have grown into this global organization dedicated to improving the lives of those affected by HI.

Read the full story:
🔗 https://njmonthly.com/articles/news/glen-ridge-mom-creates-international-rare-disease-organization/


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Why do quality-of-life studies matter in HI research? Because lived experience fills critical gaps that data alone can’t...
03/31/2026

Why do quality-of-life studies matter in HI research? Because lived experience fills critical gaps that data alone can’t.

Our latest blog by Julie Raskin explains how ongoing community participation is strengthening HI research worldwide—and why your voice is essential.

Julie goes on to highlight the work of the HI Global Registry (HIGR), as well as quality-of-life (QOL) studies by HAW Hamburg and Rezolute Bio that you can contribute to.

Read the full blog and find out more information about these QOL studies here: https://congenitalhi.org/your-ongoing-impact-on-hi-research-and-care/


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Stay up to date with CHI's upcoming events this year!➡️ Our first Family Conference of 2026 will be held on May 7-9 in A...
03/30/2026

Stay up to date with CHI's upcoming events this year!

➡️ Our first Family Conference of 2026 will be held on May 7-9 in Antalya, Turkey - registration is open!
➡️ Our third annual virtual celebration of Hyperinsulinism Awareness Day will be on June 7th
➡️ The annual Million Dollar Bike Ride fundraiser for HI research will take place on June 13th in Philadelphia, PA - more information coming soon!
➡️ Our second Family Conference will be September 5-6 in Marseille, France
➡️ We will have another cycling fundraiser opportunity on October 4th in Hammonton, NJ - more information coming soon!
➡️ The annual Sugar Soirée will be on November 21st in West Orange, NJ

We hope to see you at our events this year! You can find more information on our webpage: https://congenitalhi.org/events/


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

At CHI, we strive for a future where the world (and Word/Google) will . ⁠⁠Be a part of this groundbreaking patient-powe...
03/29/2026

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

How many people taking a somatostatin analog (SSA; octreotide, long-acting octreotide, or lanreotide) report side effect...
03/28/2026

How many people taking a somatostatin analog (SSA; octreotide, long-acting octreotide, or lanreotide) report side effects?

✅ 64% of participants who had ever taken an SSA reported at least one side effect.

Most commonly reported side effects:
🔹 Changes in stool (63%)
🔹 Stomach pain or upset (37%)
🔹 Gallstones/gallbladder sludge (33%)
🔹 Hyperglycemia (30%)
🔹 Nausea (28%)

Additionally, 76% of SSA users reported continued hypoglycemia at least once per week while on the medication.

Understanding these patterns helps improve treatment strategies and patient support.

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

This year's Rare Disease Day was full of connection, collaboration, and powerful advocacy across the country 💙 At the Ya...
03/27/2026

This year's Rare Disease Day was full of connection, collaboration, and powerful advocacy across the country 💙

At the Yale-NORD, Johns Hopkins, and Make-A-Wish Rare Disease Day events, CHI was proud to help elevate the voices of those living with congenital hyperinsulinism and other rare conditions.

Read the full blog post by Pam Weber-Leaf and celebrate the progress we’re making together: congenitalhi.org/2026-rare-disease-day-roundup


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Today is Purple Day - a day dedicated to increasing awareness about epilepsy worldwide. Hypoglycemia due to congenital h...
03/26/2026

Today is Purple Day - a day dedicated to increasing awareness about epilepsy worldwide. Hypoglycemia due to congenital hyperinsulinism can cause seizures or lifelong epilepsy.

To learn more about Purple Day, please visit https://www.purpleday.org/ And wear purple for epilepsy awareness!💜


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

📢 Important Update for the HI Community! Rezolute has received “unusual and encouraging” preliminary feedback from the F...
03/26/2026

📢 Important Update for the HI Community!

Rezolute has received “unusual and encouraging” preliminary feedback from the FDA regarding the path forward for its investigational congenital hyperinsulinism (HI) therapy, ersodetug. Despite the Phase 3 trial not meeting its primary endpoint, the FDA acknowledged that behavioral factors may have affected study results and has encouraged a deeper data review to evaluate whether the evidence could support a future New Drug Application.

This is a meaningful step for families seeking new treatment options for HI, and we’ll continue to follow developments closely.

🔗 Read the full article here: https://www.biospace.com/fda/rezolute-lauds-unusual-fda-feedback-supportive-of-path-forward-for-hypoglycemia-drug


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

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