This CHI Family Guide focuses on explaining the science of congenital hyperinsulinism (CHI), the care used today, and research that may shape future treatment. The organizations and programs below offer other kinds of help, including peer support, specialist-center information, age-specific materials, genetic-testing resources, school guidance, and opportunities to participate in research.
Congenital Hyperinsulinism International is a US-based nonprofit with a global mission that coordinates patient and family support, advocacy, conferences, mentor connections, access programs, and patient-centered research.
Congenital Hyperinsulinism International’s community-support page connects families with its private Facebook support forum, family conferences, and other opportunities to meet people who understand the experience of living with HI.
The Children’s Hyperinsulinism Charity supports families in the United Kingdom and Ireland, with particularly useful resources on school healthcare plans, educational rights, staff training, wellbeing, self-advocacy, and the transition to adult care.
CHI Materials for Kids offers books, coloring activities, music, and other materials designed to help younger children—and their siblings, friends, or classmates—understand hyperinsulinism.
The private CHI Teen and Young Adult Forum is a Facebook group where teens and young adults living with hyperinsulinism can connect and share experiences with others in their age group.
The CHI Centers of Excellence directory lists centers that Congenital Hyperinsulinism International has designated through an application and review process based on their multidisciplinary care, research, and collaboration; it is a useful starting point but is not an exhaustive list of experienced HI centers.
The CHOP Congenital Hyperinsulinism Center resources include clinician-developed materials for parents on caring for a child with HI, inheritance, and preparing for school.
Through the Open Hyperinsulinism Genes Project, people worldwide with a confirmed clinical diagnosis of CHI who cannot access genetic testing through their healthcare provider or personal resources may apply for charity-funded testing.
The University of Exeter’s resources for families provide specialist-developed guides on inheritance, mosaicism, variable penetrance, variants of uncertain significance, particular genetic forms of HI, and what it means when testing does not identify a cause.
The HI Global Registry is a patient-powered research registry open to adults with HI and to parents or caregivers; people whose HI has resolved or who have transitioned to diabetes are also eligible to contribute deidentified information about their experiences.
The CHI CGM Access Program currently allows eligible people with HI in the United States or Canada who are not using a CGM or have inconsistent access to apply for up to a 12-month supply of Dexcom G7 sensors with physician support. Participants are encouraged to complete HIGR surveys and share device data for research.