Welcome to the Congenital Hyperinsulinism International (CHI) community! We are glad you found us. Every person that is a part of the CHI community has experienced a range of emotions that comes with finding out your child has congenital hyperinsulinism (HI). This webpage was made for families like yours—families that are beginning to navigate life with HI—to create a space to find resources, support, and answers to questions you may have. Whether you are processing the diagnosis, searching for answers, or wanting to join a community that understands your challenges, our goal is to provide you with support, information and resources every step of the way. We hope this page will give you a good starting point to understanding what resources are available to you through CHI and help you connect with the growing global CHI community.
There may be terms or abbreviations presented throughout this page that may be unfamiliar to you. We have created a glossary as a reference to define some of the many words and abbreviations you may encounter as you learn more about HI.
From Members of the CHI Board of Trustees:
We wanted to reach out and extend our warmest welcome to you as members of the congenital hyperinsulinism community. We understand that receiving a diagnosis of HI can be overwhelming and frightening, but please know that you are not alone. We are here to support you every step of the way.
As parents who have been through this journey ourselves, we know how it feels to be thrown into a world of medical terms and treatments that are unfamiliar and daunting. The Congenital Hyperinsulinism International organization is a community of families, medical professionals, and researchers dedicated to advancing the understanding and treatment of this rare condition. We offer resources, support, and education, including connections to our Patient Champions — families who can share their experiences and listen to yours. We also encourage you to explore the HI global registry, which collects important data to improve quality of life, treatment options, and diagnostic practices. Together, these resources can help you navigate your journey and make a difference in the lives of our children and families, and our own lives.
