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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.

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.

02/18/2026

Elijah was sent home from the hospital where he was born without having his blood sugar checked.⁠
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I wish every hospital knew ... "How serious low blood sugar can be: the pediatrician first told us that babies can withstand it, that it’s not serious like it would be in an adult. His crying was attributed to colic, and it wasn’t until he was 18 months old that he was properly diagnosed."⁠
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Thank you for being part of our Rare Disease Day 2026 campaign! All month long, we are spotlighting the need for early detection and treatment of hyperinsulinism. 💙🩷💚⁠
⁠
Want to participate? Visit our website at https://congenitalhi.org/rare-disease-day-2026/ to learn more about the campaign, merchandise, our annual virtual gathering, and more!⁠
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Every post shared, every story submitted, every conversation sparked helps advance our mission: timely diagnosis, better care, and brighter futures for people with congenital hyperinsulinism worldwide.⁠
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| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

02/17/2026

02/16/2026

Our unique diazoxide quality of life study has already informed patients and caregivers.

One hyperinsulinism (HI) nurse shared with us that some of her patients brought the article with them to appointments, sparking new discussions about HI management with their care team.

The study combined more traditional quantitative data on diazoxide use from HIGR with the richness of qualitative data from one-on-one interviews with people with HI and their caregivers. This creates a more thorough picture of what life taking diazoxide looks like for both patients and caregivers.

Additional updates on the HI Global Registry (HIGR) are available in our 2025 Annual Report, where you can also find the research paper on diazoxide linked: 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

02/15/2026

Benjamin's hypoglycemia was recognized and managed at the hospital where he was born.

I wish every hospital knew ... "That early detection is so important. Benjamin’s blood sugar was only checked because he was born preterm at 35 weeks. If he was born full term they may not have checked in a timely manner!"

Thank you for being part of our Rare Disease Day 2026 campaign! All month long, we are spotlighting the need for early detection and treatment of hyperinsulinism. 💙🩷💚

Want to participate? Visit our website at https://congenitalhi.org/rare-disease-day-2026/ to learn more about the campaign, merchandise, our annual virtual gathering, and more!

Every post shared, every story submitted, every conversation sparked helps advance our mission: timely diagnosis, better care, and brighter futures for people with congenital hyperinsulinism worldwide.

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

02/14/2026

💙 Happy Valentine’s Day from Congenital Hyperinsulinism International! ⁠
Today, we want to take a moment to appreciate our incredible CHI community—families, patients, doctors, researchers, and advocates. Your dedication and support make a difference every day.⁠
⁠
Wishing you a day filled with love, kindness, and connection! 💙⁠
⁠

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

02/13/2026

Sophie’s hypoglycemia was recognized and managed at the hospital where she was born.

I wish every hospital knew ... "The importance of discussing and advocating for genetic testing at birth when hyperinsulinism is suspected. It saved our baby’s life."

Thank you for being part of our Rare Disease Day 2026 campaign! All month long, we are spotlighting the need for early detection and treatment of hyperinsulinism. 💙🩷💚

Want to participate? Visit our website at https://congenitalhi.org/rare-disease-day-2026/ to learn more about the campaign, merchandise, our annual virtual gathering, and more!

Every post shared, every story submitted, every conversation sparked helps advance our mission: timely diagnosis, better care, and brighter futures for people with congenital hyperinsulinism worldwide.

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

02/12/2026

How many people taking diazoxide report side effects?

✅ 85% of participants who had ever taken diazoxide reported at least one side effect.

Most frequently reported side effects:
🔹 Increased body hair (91%)
🔹 Loss of appetite (45%)
🔹 Facial changes (28%)
🔹 Swelling (27%)
🔹 Stomach pain or upset stomach (26%)

Additionally, 41% of current diazoxide 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

02/11/2026

Jeremiah was sent home from the hospital where he was born without having his blood sugar checked.

I wish every hospital knew ... "That sugar checks are important. Maybe if his sugars were checked earlier, it could've made a difference. It wasn’t until he was 10 months when he had 4 seizures back to back that he was finally diagnosed."

Thank you for being part of our Rare Disease Day 2026 campaign! All month long, we are spotlighting the need for early detection and treatment of hyperinsulinism. 💙🩷💚

Want to participate? Visit our website at https://congenitalhi.org/rare-disease-day-2026/ to learn more about the campaign, merchandise, our annual virtual gathering, and more!

Every post shared, every story submitted, every conversation sparked helps advance our mission: timely diagnosis, better care, and brighter futures for people with congenital hyperinsulinism worldwide.

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

02/10/2026

Wiremu's hypoglycemia was recognized and managed at the hospital where he was born. His sister Merindah was sent home from the hospital where she was born without having her blood sugar checked.

I wish every hospital knew ... "That family history matters! All siblings should be checked because severe hypoglycaemia and hypoglycaemic brain injuries are avoidable. Merindah nearly died and now has a hypoglycaemic brain injury. If one child has HI, then all siblings should be checked at birth."

Thank you for being part of our Rare Disease Day 2026 campaign! All month long, we are spotlighting the need for early detection and treatment of hyperinsulinism. 💙🩷💚

Want to participate? Visit our website at https://congenitalhi.org/rare-disease-day-2026/ to learn more about the campaign, merchandise, our annual virtual gathering, and more!

Every post shared, every story submitted, every conversation sparked helps advance our mission: timely diagnosis, better care, and brighter futures for people with congenital hyperinsulinism worldwide.

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

02/09/2026

Did you know that this week is Feeding Tube Awareness Week? Feeding tubes play an important role not only in our hyperinsulinism community but in the rare disease community at large!

“Many children with hyperinsulinism (HI) need a gastrostomy tube (G-tube), when thin tubing is inserted into the child’s stomach to deliver food or medicine, including dextrose. Other children with HI may need a jejunostomy tube (J-tube), which deliver food or medicine straight into the small intestine, bypassing the stomach.”

For additional resources and tips for G- and J- tube management, visit Children's Hospital of Philadelphia (CHOP)'s page: https://www.chop.edu/news/tips-managing-your-child-s-g-or-j-tube

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

02/08/2026

Skylar was sent home from the hospital where she was born without having her blood sugar checked.

I wish every hospital knew ... "that blood sugar should be checked for every newborn and if it is low, monitored regularly before sending babies home."

Thank you for being part of our Rare Disease Day 2026 campaign! All month long, we are spotlighting the need for early detection and treatment of hyperinsulinism. 💙🩷💚

Want to participate? Visit our website at https://congenitalhi.org/rare-disease-day-2026/ to learn more about the campaign, merchandise, our annual virtual gathering, and more!

Every post shared, every story submitted, every conversation sparked helps advance our mission: timely diagnosis, better care, and brighter futures for people with congenital hyperinsulinism worldwide.

| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

02/07/2026

What types of hyperinsulinism (HI) are most common?

✅ 49% reported diffuse disease
✅ 10% reported focal HI
✅ 4% reported atypical HI

Understanding these distributions helps us better address patient needs and advance research.

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

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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