Finding the right medical care team is one of the most important parts of managing HI. HI is a rare condition, which means it may be unfamiliar to many of the medical care providers that you may have, and in some cases, you may want to share resources and connections with your care team, so they can build their knowledge of the condition.
Finding Medical Care
CHI has identified HI Centers of Excellence (COEs), which are hospitals that provide exceptional multi-disciplinary care to people with HI and their families. These COEs have significant HI experience and offer services to create comprehensive treatment plans for people with HI. On the map below, you can see the 8 COEs that earned this designation from CHI in 2024.
Traveling to a COE may not be possible or desirable for everyone. If your child is not being seen at a COE, we encourage you to talk with your local pediatric endocrinologist about consulting with a COE. This partnership can help ensure your child is receiving care that reflects the most current HI knowledge and best practices. To help communicate the needs of people with HI, CHI has created a series of Advocacy and Awareness documents (available in multiple languages) that can be shared with medical professionals.
HI Best Practices
A collaboration between HI expert physicians, clinicians, and patient advocates led to the development and publication of the International Guidelines for the Diagnosis and Management of Hyperinsulinism. We invite and encourage you to read and share this document with your providers to provide them with background knowledge on treatment and management of individuals with HI (your doctor may already be familiar with them!). For those who prefer to read about this topic in a very straightforward and understandable way, the CHI Collaborative Research Network (an expert group of HI clinicians, researchers, and patient advocates) created a simplified version of this document. This version was created to be a line-by-line translation of the official guidelines, but it has been written in a way to be understood by the whole HI community.
