Welcome to the new look for CHI’s website. Our goal is to make information easier to find; if you have any issues or questions during the initial transition stage, please contact us.

CHI is a leading nonprofit dedicated to improving the lives of children and adults living with Congenital Hyperinsulinism (HI).

CHI provides a world of information, resources, and support to the HI community. CHI advocates on behalf of patients for better treatments and access to care. CHI is dedicated to increasing awareness of the disorder as it leads to more timely diagnosis and the best outcomes for patients. CHI supports medical research for improved therapies, potential cures, and timely diagnosis. CHI works globally because we are stronger as an international community. Cooperation across borders fosters important advances in medicine.

HI is a life-threatening disorder that causes dangerously low blood sugar levels. Prolonged or severe low blood sugar can cause seizures, brain damage, and even death. We hope you will partner with us to prevent damage and death, search for better treatments, and improve the quality of life for all HI patients.

International Guidelines for hyperinsulinism
NEW: The first-ever international hyperinsulinism guidelines have been published and are now available to the public! These guidelines are a collaboration of work by HI experts around the world, including many who are a part of the CHI Collaborative Research Network and Tai Pasquini of the CHI staff. Patient and caregiver representatives of the CHI Congenital Hyperinsulinism Collaborative Research Network provided the patient perspective. These guidelines are available free of charge and can be downloaded and shared with your care team. The new recommendations include:

  • Diagnosis
  • Medical Management
  • Surgical Management
  • Discharge Planning
  • Longterm Management of Patients with Hyperinsulinism

And more! Find the full guidelines by clicking here.

Open Hyperinsulinism Genes Project: Increasing Access to Genetic Testing

In 2018, Congenital Hyperinsulinism International partnered with researchers at the University of Exeter to fund the Open Hyperinsulinism Genes Project, an international genetic testing program. As a part of our joint initiative, CHI covers the costs of genetic testing for individuals who would otherwise be unable to receive genetic screening, regardless of their location in the world. This partnership is helping to ensure that there are no barriers for individuals diagnosed with this condition. You can find out more information on this exciting program here.

Hyperinsulinism Genes referrals map

Recent Published Articles

CHI Global Registries article

Global Registries in Congenital Hyperinsulinism

This article characterizes HI through the experience of individuals who live with it. It includes descriptive statistics on the birthing experience, hospitalizations, medication management, feeding challenges, experiences with glucose monitoring devices, and the overall disease burden to provide insights into the current data in the HI Global Registry (HIGR) and demonstrate the potential areas of future research.

Click here to read the article.

Article on CHI and the CRN

Congenital Hyperinsulinism International: A Community Focused on Improving the Lives of People Living With Congenital Hyperinsulinism

This article describes the current challenges of living with HI including diagnosis and disease management told from the perspective of people who live with the condition, shares family stories of life with HI, and how Congenital Hyperinsulinism International is working to improve the lives of HI patients and their families.

Click here to read the article.

CHI article Orphanet

Article on Congenital Hyperinsulinism in Infancy and Childhood

For the first time in the medical literature, the perspective of families and patients with congenital hyperinsulinism is published together with insights from clinical experts. In this publication, the authors Indraneel Banerjee, Julie Raskin, Jean‑Baptiste Arnoux, Diva D. De Leon, Stuart A. Weinzimer, Mette Hammer, David M. Kendall and Paul S. Thornton, present the key clinical challenges and unmet needs, infused with knowledge from the patient and family perspective on daily life with congenital hyperinsulinism.

Read the article here.

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