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.

Today is International Day of Happiness! 💙😄 Here are just a few smiling faces from our hyperinsulinism community! ...
03/20/2026

Today is International Day of Happiness! 💙😄 Here are just a few smiling faces from our hyperinsulinism community!


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Eid Mubarak from CHI! We hope that those who observed Ramadan have had an easy fast. | Hyperinsulinism | Congeni...
03/19/2026

Eid Mubarak from CHI! We hope that those who observed Ramadan have had an easy fast.


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

We are thrilled to share that our article in the Royal College of Midwives' MIDIRS journal is now publicly available! "N...
03/18/2026

We are thrilled to share that our article in the Royal College of Midwives' MIDIRS journal is now publicly available!

"Neonatal hypoglycaemia: consider hyperinsulinism" provides an overview of hyperinsulinism (HI) and the importance of severe hypoglycemia detection to an audience of midwives, neonatal nurses, and other birthing professionals. This was a wonderful opportunity to raise awareness of HI within this medical community, who are often the first to be with newborn babies.

This article is by CHI staff members Lauren Lopez and Julie Raskin and CHI Collaborative Research Network (CRN) members Antonia Dastamani, Clare Gilbert, and Kate Morgan, as well as Sinead McGlacken-Byrne of Great Ormond Street Hospital (GOSH).

MIDIRS retains the copyright of this article.

Access the article on our publications page here: https://congenitalhi.org/publications-and-podcasts/


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Happy 20th birthday to Alyssa! 🥳 We hope you have a wonderful day! 💙 | Hyperinsulinism | Congenital | HI | Hypog...
03/17/2026

Happy 20th birthday to Alyssa! 🥳 We hope you have a wonderful day! 💙


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Happy Saint Patrick's Day from CHI! 🍀Wishing those who are celebrating lots of luck! 🌈 | Hyperinsulinism | Conge...
03/17/2026

Happy Saint Patrick's Day from CHI! 🍀Wishing those who are celebrating lots of luck! 🌈


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Avayah’s hypoglycemia was recognized by her mother at the hospital when she was 6 hours old. Otherwise, she may have bee...
03/16/2026

Avayah’s hypoglycemia was recognized by her mother at the hospital when she was 6 hours old. Otherwise, she may have been sent home without a diagnosis.

I wish every hospital knew ... "To make checking blood sugars on a baby a mandatory thing, especially before discharging a baby."⁠
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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

Happy Mother's Day to all of the fabulous hyperinsulinism (HI) mothers in the United Kingdom and Ireland! You are all su...
03/15/2026

Happy Mother's Day to all of the fabulous hyperinsulinism (HI) mothers in the United Kingdom and Ireland! You are all such a strong force in the HI community - thank you for advocating for the needs of children with HI! We hope you enjoy this special day with family.


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

🌟 Join us in Antalya! 🌟We’re excited to announce the 2026 CHI Family Conference, taking place May 7–9, 2026 at the beaut...
03/14/2026

🌟 Join us in Antalya! 🌟
We’re excited to announce the 2026 CHI Family Conference, taking 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

Did you know that today is World Sleep Day? 💤 As the HI community knows, HI affects sleep due to middle-of-the-night sug...
03/13/2026

Did you know that today is World Sleep Day? 💤

As the HI community knows, HI affects sleep due to middle-of-the-night sugar checks and feeds to keep blood sugar stable throughout the night. 🌙

➡️ 1 in 4 people in the HI Global Registry reported that they were unable to last through the night without eating to prevent significant blood sugar drops (below 70 mg/dL or 3.9 mmol/L). 📊

🗨️ Share your HI sleep experience on social media using in honor of !

If you would like to learn more about the HI Global Registry (HIGR), please visit higlobalregistry.org 🔗


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Connor's hypoglycemia was recognized at the hospital where he was born, but he was transferred to a CHI Center of Excell...
03/13/2026

Connor's hypoglycemia was recognized at the hospital where he was born, but he was transferred to a CHI Center of Excellence for treatment.
⁠
I wish every hospital knew ... "To transfer a child if they are critically ill. A specialized children's hospital will serve them much better. If I had known that then, he wouldn't have had seizures due to all the low blood sugars."⁠
⁠
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

The team at the Congenital Hyperinsulinism Center at CHOP has a new study to understand how cognitive function changes o...
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

Skyler's hypoglycemia was recognized and managed at the hospital where she was born.⁠I wish every hospital knew ... "How...
03/12/2026

Skyler's hypoglycemia was recognized and managed at the hospital where she was born.
⁠
I wish every hospital knew ... "How many resources are actually available for their patients diagnosed with HI."⁠
⁠
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

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