Congenital Hyperinsulinism International

03/12/2026

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

03/12/2026

Skyler's hypoglycemia was recognized and managed at the hospital where she was born.
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I wish every hospital knew ... "How many resources are actually available for their patients diagnosed with HI."⁠
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Thank you for being part of our Rare Disease Day 2026 campaign! 💙🩷💚⁠ Visit https://congenitalhi.org/rare-disease-day-2026/ to view our slideshow of responses from the HI community!
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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

03/11/2026

March is National Nutrition Month! 🥗🍎🥕

For everyone, nutrition is incredibly important. For people with hyperinsulinism, its importance is heightened.

➡️ In honor of National Nutrition Month, we are sharing this fantastic and comprehensive presentation about diet across the different types of hyperinsulinism and life phases:https://congenitalhi.org/wp-content/uploads/2025/03/CHI-Presentation_Michelle-Feury.pdf 🔗 This presentation is from the 2023 CHI Family Conference in Brisbane, Australia, and was created and presented by Michelle Fuery, Senior Dietician at Queensland Children’s Hospital.


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

03/11/2026

Olivia’s hypoglycemia was recognized at the hospital where she was born but was sent home without an HI diagnosis.
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I wish every hospital knew ... "To keep checking a baby’s sugars, especially if they are hypoglycemic, before sending them home. It could have helped us get her diagnosed sooner."⁠
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Thank you for being part of our Rare Disease Day 2026 campaign! 💙🩷💚⁠ Visit https://congenitalhi.org/rare-disease-day-2026/ to view our slideshow of responses from the HI community!
⁠
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

03/10/2026

03/10/2026

From a challenging start at life to earning top place in her class, Abeera’s journey shows what is possible for children living with hyperinsulinism. 💙

Her father, Saqib, shares heartfelt thanks to the medical team in Lahore, Pakistan, and to CHI’s support for HI families around the world during their toughest moments.

"I wish to share Abeera’s achievement with other parents so that they do not lose hope. With the right medical care, support, and faith, children can overcome great challenges and achieve wonderful success."

Read their story on the CHI blog: https://congenitalhi.org/a-pakistani-familys-message-of-hope/


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

03/10/2026

Juliana’s hypoglycemia was recognized at the hospital where she was born, but she was sent home without a diagnosis. She was later diagnosed at a CHI Center of Excellence.
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I wish every hospital knew ... "The correct protocols for babies experiencing hypoglycemia and weren’t so dismissive to parents and releasing them too soon only to wind back up in an ER in critical condition as we experienced."⁠
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Thank you for being part of our Rare Disease Day 2026 campaign! 💙🩷💚⁠ Visit https://congenitalhi.org/rare-disease-day-2026/ to view our slideshow of responses from the HI community!
⁠
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

03/09/2026

Martin was born premature and his hypoglycemia was recognized at the hospital, but he was misdiagnosed as transient and sent home without treatment.
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I wish every hospital knew ... "To do a complete screen and follow up when hypoglycemia is noticed before sending a child home. It would have saved us 2 years with no diagnosis."⁠
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Thank you for being part of our Rare Disease Day 2026 campaign! 💙🩷💚⁠ Visit https://congenitalhi.org/rare-disease-day-2026/ to view our slideshow of responses from the HI community!
⁠
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

03/08/2026

Anthony 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 important it is to check blood sugar levels, and to know the signs when sugar levels are low."⁠
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Thank you for being part of our Rare Disease Day 2026 campaign! 💙🩷💚⁠ Visit https://congenitalhi.org/rare-disease-day-2026/ to view our slideshow of responses from the HI community!
⁠
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

03/08/2026

Happy International Women’s Day! We are proud to work daily with a strong network of female physicians, nurses, patients, researchers, advocates, and HI mothers. Thanks to you, CHI can continue to work towards improving the lives of those with hyperinsulinism across the globe.


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

03/07/2026

June’s hypoglycemia was recognized and managed at the hospital where she was born.
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I wish every hospital knew ... "That blood sugar checks should be part of every newborn baby’s vitals, not just preterm babies. June’s blood sugar was only checked because she was born preterm at 34 weeks. If she was born full term, they would not have checked and sent her home, which would have resulted in her having seizures."⁠
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Thank you for being part of our Rare Disease Day 2026 campaign! 💙🩷💚⁠ Visit https://congenitalhi.org/rare-disease-day-2026/ to view our slideshow of responses from the HI community!
⁠
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

03/06/2026

Happy third birthday to Theo! 🥳 We hope that you have a wonderful and SWEET 🎂 day with loved ones! 💙


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease