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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.

04/24/2026

How often do people with hyperinsulinism (HI) experience developmental delays?

✅ 48% of participants reported delays in reaching developmental milestones.

Most common areas of delay:
🔹 Gross motor skills (e.g., sitting, crawling, walking) (70%)
🔹 Language, speech, or communication (61%)

Additionally:
🔹 About 25% described delays in areas not listed in the survey, most commonly related to feeding issues.

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

04/23/2026

🌟 Last call for our Family Conference in Antalya! 🌟
We’re excited to share that the next CHI Family Conference will take place May 7–9, 2026 at the beautiful Royal Seginus Hotel in Antalya, Turkey.

Families, clinicians, researchers, and HI community members from around the world are invited to connect, learn, and recharge together. Expect inspiring talks, small‑group sessions, HI‑Stories, fun kids’ activities, and the chance to meet leading HI experts—all in a stunning coastal setting.

🧸 Translation + babysitting provided
👨‍⚕️ Featuring world‑renowned HI physicians & researchers
🤝 Hosted by CHI with Dr. Huseyin Demirbilek & KOHHA-DER

👉 Register now to save your spot!
https://congenitalhi.org/2026-chi-family-conference-in-turkey/

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

04/22/2026

🚴‍♂️ Ride (or walk!) for hyperinsulinism research with us!

Congenital Hyperinsulinism International is honored to take part in the 2026 Million Dollar Bike Ride, supporting a hyperinsulinism pilot research project.

This event empowers organizations and advocates to directly fund innovative scientific research—and every contribution makes a difference.

Join us on Saturday, June 13, 2026, at the University of Pennsylvania campus in Philadelphia, PA! Learn how to get involved and join Team CHIbra:
🔗 https://congenitalhi.org/the-2026-million-dollar-bike-ride/

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

04/21/2026

🔁 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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04/20/2026

The team at the Congenital Hyperinsulinism Center at CHOP has a new study to understand how cognitive function changes over time in children with HI. You will be asked to come to CHOP for 3 study visits (one each year) that will each last about 2 hours. At the visit. you will be asked to complete neurocognitive tasks (like computer games) and surveys. Travel support and compensation for your time are provided.

You may be eligible for this study if you are 7 to 15 years old and you have a diagnosis of either congenital hyperinsulinism (CHI) or are a healthy volunteer. If you’re interested in learning more, please email HIresearch@chop.edu!

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

04/19/2026

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

04/18/2026

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

04/17/2026

New research spotlight!

A newly published Nature article explores how the Open Hyperinsulinism Genes Project is reducing global barriers to genetic diagnosis and care for individuals with hyperinsulinism (HI). This project, funded through a joint collaboration between CHI and the University of Exeter, provides free genetic testing to individuals around the world who are otherwise unable to access testing. To date, the program has provided genetic testing to 1,176 individuals from 65 countries.

By enabling open, collaborative sharing of HI gene data, this project supports earlier diagnoses, better treatment decisions, and improved understanding of the condition globally.

This collaboration represents an important step forward for rare disease research, global health equity, and the HI community.

We’re proud to see HI research advancing in ways that center equity, collaboration, and patients everywhere.

🔗 Read the full article here: https://www.nature.com/articles/s44360-026-00119-9.epdf?sharing_token=KzooyIYru0MG0P9bKJcyLdRgN0jAjWel9jnR3ZoTv0MV6MjWsh-HB9djiex3-yDilq0hvuocF1J5h3f57gV1zhJPUfDv4zR9v51Qo1egfWAx9dZCnCOB5P72nhzveU5Qfs7xVx1O7whECxgWZdtthLgW55fJswx65GSGEA_SX4k%3D

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

04/16/2026

❓️ Have you joined our Congenital Hyperinsulinism International support forum on Facebook?

With over 2,600 members from 87 countries, our forum offers a strong network where individuals with hyperinsulinism and their loved ones can ask questions, share information, and come for support and understanding 💙

You can join the forum at https://bit.ly/hi-fb-group

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

04/15/2026

Your story is a guide for change.

Rezolute’s VOICE study is capturing the real-life impact of congenital hyperinsulinism (cHI). Your insights will push for better care, awareness, and support.

📣 Speak up. Drive progress.

🔗 Sign up and share your story: https://sheconsulting.qualtrics.com/jfe/form/SV_9HVr5FoWE9t6dRc

“Your Lived Experience. Your Impact.”

04/14/2026

How many people with hyperinsulinism (HI) have neurological disorders?

✅ 38% of participants reported being diagnosed with one or more neurological conditions.

Most common neurological disorders:
🔹 Epilepsy (40%)
🔹 Attention deficit/hyperactivity disorder (ADHD) (37%)
🔹 Learning disability (36%)
🔹 Autism spectrum disorder (ASD) (30%)
🔹 Intellectual disability (18%)

Note: This is likely an underestimate due to the younger age of most HIGR participants.

Understanding these associations helps guide care and support for individuals with HI.

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

04/13/2026

New blog post! 📣 Read HIGR Ambassador Anna's reflections from Nutrition Month in March as a young adult with HI. 💙
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Anna explains how nutrition is more than just food when you're living with hyperinsulinism, since "the right foods, the right timing, and the right support can prevent dangerous hypoglycaemic episodes and protect long-term health."
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Anna also emphasizes the importance of tracking any changes in your nutrition needs in the HI Global Registry (HIGR):
"Since nutritional needs and dietary habits evolve, it is essential that participants of the HI Global Registry update the Diet and Feeding survey on a regular schedule. Doing so ensures that your HIGR data contains the most up-to-date information about your nutrition, and diet. When everyone in the HI community participates, the combined data can provide better insights into the nutritional and dietary needs of the community. Research that utilizes HI Global Registry data ultimately translates into better care and support that truly aligns with an individual’s current needs. Keeping this data current is a simple step that has a meaningful impact on the quality of care.

Read Anna's full blog post here: https://congenitalhi.org/nutrition-month/
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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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