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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.

11/12/2025

The Sweetest Auction is Live! 💙✨️

Even if you can’t attend in person, you can still join the fun! Our silent auction is fully online, so you can bid on incredible items from anywhere in the world—all you need is an email address. (International shipping charges may apply.)

Auction highlights include exquisite jewelry, unique experience packages, sports tickets, restaurant gift cards and more.

Every bid and donation supports Congenital Hyperinsulinism International (CHI) and helps improve the lives of children born with this rare disease. 💙

Start bidding today at https://onecau.se/_dcy2e1 and make this year’s auction our sweetest yet!

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

11/11/2025

The Open Hyperinsulinism Genes Project: Providing genetic testing to 1088 individuals from 64 countries 🌍️🧬

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.

Through this initiative, we have turned constraints of limited resources into an advantage for scientific progress while improving the health of children worldwide.

The latest country we have funded HI genetic testing for is Trinidad and Tobago!

You can find additional details including contact and testing information here: https://congenitalhi.org/open-hyperinsulinism-genes-project/

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

11/10/2025

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

11/09/2025

11/08/2025

"I am happy to share my CGM and glucometer data with CHI and I encourage other patients to share theirs. I’m hoping that with a larger volume of data, a new pattern might appear that could spark an additional area of research that could lead to a cure."

Sharing your glucose values helps HI researchers understand the unique glucose patterns in people with HI. ⁠
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Visit higlobalregistry.org at the link in our bio 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

11/07/2025

❓️ Did you know that congenital hyperinsulinism has its own Wikipedia page?

✍️ In August 2023, Team CHI met with experts in the HI field and Wikipedia authors to edit and compile a comprehensive article detailing the symptoms, causes, diagnoses, and history of HI, as well as the many patient advocacy groups and Centers of Excellence working to support patients!

🔗 You can find the full Wikipedia article here: https://en.wikipedia.org/wiki/Congenital_hyperinsulinism
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11/06/2025

November is Epilepsy Awareness Month, a cause dear to the CHI Community.

Prolonged hypoglycemia from congenital hyperinsulinism can cause seizures – which present very differently in newborns than in adults.

Share this infographic to raise awareness! ⁠ ⁠
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11/05/2025

Read about CHI's HI-lights in our Fall Quarterly Newsletter!

At CHI, our mission continues to drive meaningful change for people with hyperinsulinism (HI) around the world. This past quarter brought major milestones in research, advocacy, and community connection; from an inspiring family conference to groundbreaking studies.

Access the full newsletter here: https://congenitalhi.org/fall-2025-3rd-quarter-newsletter/

Thank you for being part of our community and helping advance research, awareness, and support for people with HI worldwide.

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

11/04/2025

Did you know that November 17th National Epilepsy Month? 💜 Prolonged hypoglycemia due to congenital hyperinsulinism (HI) is a risk factor for developing an epilepsy diagnosis.

1 in 6 people with HI in the HI Global Registry (HIGR) report having epilepsy.

You can learn about HI and its effects at www.congenitalhi.org ⁠

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

11/03/2025

Thank you to Beyond the Joke for highlighting the broadcast of Blood Sugar Baby by HI Dad Scott Bennett, and for raising awareness about congenital HI and the work of Congenital Hyperinsulinism International.

Scott Bennett's acclaimed comedy set will air on BBC's Radio 4 on Wednesday, November 5 at 6.30pm 🌟

"Blood Sugar Baby tells the true story of Scott and Jemma Bennett’s infant daughter Olivia and her battle with a rare genetic condition, how she was nearly fatally misdiagnosed and how Scott challenged the hospital to improve their care by taking his dad’s advice to 'Put a tie on.'"

Read the full article at https://beyondthejoke.co.uk/content/16788/scott-bennetts-blood-sugar

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

11/02/2025

Who has a birthday 🥳 in November? CHI wants to give all our November 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

11/01/2025

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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