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.

Happy eighth birthday to Annika! 🎈CHI hopes you have the SWEETEST birthday!!! 🥳 | Hyperinsulinism | Congenital |...
01/28/2026

Happy eighth birthday to Annika! 🎈CHI hopes you have the SWEETEST birthday!!! 🥳


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

In honor of , CHI is highlighting our work with biotechnology partners developing new HI treatments. Through our advoca...
01/28/2026

In honor of , CHI is highlighting our work with biotechnology partners developing new HI treatments.

Through our advocacy and research efforts, especially the HI Global Registry (HIGR), we help advance scientific understanding of HI across ages and regions. The more we learn, the better future treatment options can be.

We’re grateful to the biotechnology companies that are developing new treatments for congenital hyperinsulinism and encourage others to join this vital area of innovation.

Learn more about current HI clinical trials and how CHI contributes to their progress: https://congenitalhi.org/clinical-research-trials/



| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

New guest blog post! ✨Shohei Matsumoto of the Japan Hyperinsulinism Patients and Families Association (JHIA) shares an i...
01/27/2026

New guest blog post! ✨
Shohei Matsumoto of the Japan Hyperinsulinism Patients and Families Association (JHIA) shares an important update on JHIA’s recent advocacy efforts in Japan.

JHIA met with representatives across multiple government sectors to highlight the urgent needs of people with congenital hyperinsulinism.

Shohei writes: “As this condition is a rare disease, appropriate support is lacking, often falling through the cracks of existing systems. Some necessary treatments and tests are still not covered by insurance, and there are significant disparities in medical care across kindergartens, schools, and welfare facilities, resulting in a situation where not everyone receives adequate support. We held discussions to raise awareness of these issues with the national and local governments and to encourage collaboration with the patient association towards finding solutions.”

Read the full blog post here:
🔗 https://congenitalhi.org/the-japan-hyperinsulinism-patients-and-families-association-jhia/


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

01/26/2026

Meet Lucy: a vibrant 37‑year‑old thriving with congenital hyperinsulinism (HI)! 💙⁠
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Her journey, from an early misdiagnosis of epilepsy to receiving expert care at the CHI Center of Excellence (COE) Great Ormond Street Hospital (GOSH), shows the power of resilience and the importance of proper diagnosis.⁠
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Now, Lucy shares her story to inspire young people with HI to embrace life fully and fearlessly. ✨⁠
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Have your own HI experience to share?⁠
Send us a DM or email Lbarnett@congenitalhi.org!⁠
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| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Data from the HI Global Registry (HIGR) was presented at four academic conferences in 2025. Topics included: 🔹 Feeding i...
01/24/2026

Data from the HI Global Registry (HIGR) was presented at four academic conferences in 2025.

Topics included:
🔹 Feeding issues
🔹 The impact of hyperinsulinism (HI) on family finances and time
🔹 Continuous glucose monitoring
🔹 Limitations of current screening guidelines for neonatal hypoglycemia

These poster presentations provide opportunities for HI researchers to talk about their work in one-on-one or small group discussions with other researchers, encouraging collaboration towards projects improving the lives of people with HI.

Additional updates on the HI Global Registry (HIGR) are available in our 2025 Annual Report, where you can also find a link to our posters page: 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

Thanks, Jaime, for sharing this quote! CHI is grateful to have a community of patients, patient families and friends, ph...
01/23/2026

Thanks, Jaime, for sharing this quote! CHI is grateful to have a community of patients, patient families and friends, physicians, researchers, and staff working to improve the lives of people with HI around the world.⁠ ⁠
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We want to share YOUR quotes! Sharing a piece of your story helps us continue to raise awareness and build our HI community. DM us or email lbarnett@congenitalhi.org.⁠
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Happy 2nd birthday to Leilani! 🥳 CHI wishes you the SWEETEST birthday! 🎈 | Hyperinsulinism | Congenital | HI | H...
01/22/2026

Happy 2nd birthday to Leilani! 🥳 CHI wishes you the SWEETEST birthday! 🎈


| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

Help us spread the word and inform the world about hyperinsulinism! 🌍️⁠⁠💙 HYPERinsulinism is a condition causing the bod...
01/21/2026

Help us spread the word and inform the world about hyperinsulinism! 🌍️⁠
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💙 HYPERinsulinism is a condition causing the body to create too much insulin ⬆️⁠
💙 This causes HYPOglycemia, or low blood sugar ⬇️⁠
💙 Blood sugar is the main source of energy for the brain. 💡⁠
💙 Treating low blood sugar urgently protects brain function and development! 🧠 ⁠
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🔗 Our infographics are available in six languages at https://congenitalhi.org/chi-infographics/⁠
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The HI Global Registry (HIGR) is available in seven languages and has participants from 62 different countries. Since th...
01/20/2026

The HI Global Registry (HIGR) is available in seven languages and has participants from 62 different countries.

Since the launch of additional languages, 21% of new registrants (15% of all HIGR participants) chose to complete surveys in a non-English language.

Languages offered include: Dutch, French, German, Italian, Korean, Portuguese, and Spanish.

We hope to expand access to HIGR in the future with the addition of more languages!

Additional updates on the HI Global Registry (HIGR) are available in our 2025 Annual Report: 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

HI Global Registry (HIGR) data contributed to a recent study on the quality of life while taking diazoxide – this is the...
01/19/2026

HI Global Registry (HIGR) data contributed to a recent study on the quality of life while taking diazoxide – this is the first study of its kind!

The study combined data from HIGR surveys with one-on-one interviews with HIGR participants and created a more thorough picture of what life looks like while taking diazoxide 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

Connect with Congenital Hyperinsulinism International (CHI)! Our website congenitalhi.org is an excellent resource highl...
01/18/2026

Connect with Congenital Hyperinsulinism International (CHI)!

Our website congenitalhi.org is an excellent resource highlighting the latest information on HI and opportunities to connect with the community.

Follow us on these platforms to stay updated on HI news, events, and more:⁠
💙Twitter/X: ⁠
💙Instagram/Threads: ⁠
💙Facebook: ⁠
💙Linkedin: Congenital Hyperinsulinism International⁠
💙Youtube: Congenital Hyperinsulinism International⁠
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| Hyperinsulinism | Congenital | HI | Hypoglycemia | Rare Disease

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