Resources for Families

Downloadable Leaflets

We are developing information sheets for families that help to explain lots of different topics around the genetics of congenital hyperinsulinism. We have also made one-page explainers that should be quick ways to find out what’s in each information sheet before you read it. These resources have been developed with a clinical geneticist, research scientists, patient advocacy organisations, clinical teams at the UK CHI Centres of Excellence, and a Royal Literary Fund fellow at Royal Devon University Healthcare Trust.

We hope you find these resources useful, and if you have any ideas on what you’d like next, we’d love to hear from you!

Across our information sheets and one-page guides, technical terms used by healthcare professionals to describe aspects of genetics and congenital hyperinsulinism are highlighted in blue. These terms are explained in greater detail in our Glossary.

Download our glossary here

The Exeter Centre for Hyperinsulinism Genetics YouTube Channel

Our YouTube channel shares videos from our team, including conference talks, research updates, and easy-to-understand educational content. Our aim is to increase awareness and understanding of congenital hyperinsulinism, share the latest discoveries in genetics, and support families, patients, and healthcare professionals around the world. Access it here

The Congenital Hyperinsulinism Wikipedia Page

In 2022 a committee of experts which included a geneticist for the HIgenes team produced a consensus update for the congenital hyperinsulinism Wikipedia page. This project was made possible by working with a skilled Wikipedian in Residence at the National Institute of Health Research (NIHR) and the Congenital Hyperinsulinism International, Collaborative Research Network. The page provides a comprehensive overview of the diagnosis and management of congenital hyperinsulinism.

Click to access Wikipedia page

Family Support and Advocacy Organisations

Links to some organisations that provide support, education, and advocacy for individuals and families living with congenital hyperinsulinism.

Congenital Hyperinsulinism International

Global organisation

Access their website

The Children's Hyperinsulinism Charity

UK-based organisation

Access their website

Sugar, by Raissa Hacohen

A tale of mother and medicine. Available to buy on Amazon.com

‘Raissa shares her inner life with prose that is both poetic and unpretentious. Her memoir is a fantastic read and is a testament to the power of a mother’s love’ – Julie Raskin, Executive Director, CHI

InSequence Podcast: Chasing a Cure: Searching for answers to Congenital Hyperinsulinism leveraging genomics

In this podcast you hear insights from Julie Raskin, Congenital Hyperinsulinism International (CHI), New Jersey, who is mom to Ben who has congenital hyperinsulinism; Sheila Bose parent to 3 children born with congenital hyperinsulinism; Dr Sarah Flanagan, University of Exeter Medical School; Dr. Diva De León-Crutchlow, Congenital Hyperinsulinism Center at Children’s Hospital of Philadelphia; and Dr. Paul Thornton, Cook Children’s Medical Center, Texas.

Listen Here