Congenital Hyperinsulinism International (CHI) is excited to announce June 7, 2025 will be Hyperinsulinism Awareness Day. Congenital hyperinsulinism (HI) is the most frequent cause of severe, persistent hypoglycemia (low blood sugar) in newborns.
“Hyperinsulinism is something everyone should know about because the worst consequences of the condition are all preventable with timely recognition and management,“ says Julie Raskin, CEO of CHI. “CHI raises global awareness of the condition and offers vital support to those affected and their families. No one should have to face HI alone.”
Jump ahead to learn how to participate.
Untreated or improperly treated hypoglycemia can be dangerous because the brain relies on glucose as its primary source of energy. Without enough glucose, permanent brain damage can occur, potentially impacting a child’s development. The risk of brain damage is higher if HI is not diagnosed and treated quickly or if treatment does not work well at preventing ongoing hypoglycemia. However, with the right treatment, hypoglycemia can be managed, and brain damage can be avoided. Treatment options for people with HI are actively evolving through on-going clinical trials.
In most countries, Persistent HI has an incidence of up to 1:28,000 births. Some forms of HI are linked to a genetic defect and can persist throughout life; others will resolve more quickly and are considered transient. Transient cases are far more common, occurring as frequently as 1 in 1,200 births. Brain damage is a risk in both cases. CHI hopes that HI Awareness Day will create a broader knowledge, and better understanding of the need for prompt diagnosis and management by established protocols.
“In babies with HI, the pancreas secretes insulin in an uncontrolled way, even when blood glucose levels are low. These babies present at birth with severe hypoglycemia that can lead to irreversible brain damage therefore recognizing the condition and treating it is of the greatest urgency,” says Diva De Leon-Crutchlow, MD, director of Children’s Hospital of Philadelphia’s Hyperinsulinism Center and Chief of the Division of Endocrinology at CHOP. “In hospital maternity wards and pediatricians’ offices, glucose is a vital sign that must not be ignored.”
How to participate:
By participating in our campaign, you will be directly supporting our mission to raise awareness and prevent avoidable brain damage.
Share our Glucose as a Vital Sign campaign image on your social media, with family and friends, and with medical professionals. The images are available to download in multiple languages here below (clicking either link will initiate an automatic download of the image to your “Downloads” folder):
For people with hyperinsulinism/hyperinsulinism families:
Your support is critical to informing the importance of Glucose as a Vital Sign; your or your child’s story can help the world understand the importance of early blood glucose checks.
To contribute to this campaign, DM or email lbarnett@congenitalhi.org with:
- Your/your child’s baby photo 📸
- Your/your child’s first recorded glucose value 🩸
- A statement on why you support the Glucose as a Vital Sign Campaign
About the Glucose as a Vital Sign campaign:
The Glucose as a Vital Sign campaign began with CHI’s Collaborative Research Network (CRN) in 2023 with the goal of educating medical professionals and the general public about the consequences of undiagnosed hyperinsulinism and the importance of early blood glucose checks. The CRN is a dynamic international collaboration of 60+ researchers, clinicians, and expert patient and caregiver advocates working together to accelerate hyperinsulinism research. Their input was essential in the creation and dissemination of the campaign. You can view a list of our CRN members here.