Welcome to the Children's Hyperinsulinism Charity
Supporting families across the UK and Ireland
Welcome to our website:
- Understanding Hyperinsulinism
- Â Support Group for Families
- Â Developmental & Neurological Support
- Â Advocacy and Research
- Â Resources for Children and Young People
- Â School Information
- YouTube Channel
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The Children's Hyperinsulinism Charity
Welcome to The Children’s Hyperinsulinism CharityÂ
We are a UK and Ireland-based charity dedicated to supporting children and young adults living with Congenital Hyperinsulinism (CHI), along with their families. Whether you are navigating a new diagnosis or seeking the latest research and advocacy updates, our website offers trusted information on CHI management, treatment options, genetics, and ways to connect with others in the HI community. Together, we raise awareness, drive research, and stand beside families every step of the way.
What We DO
Supporting Families
We are here for every stage of the Congenital Hyperinsulinism journey, from the time of diagnosis, through early childhood, starting school, and the transition to adult services.
Whether you’re seeking answers, connection, or reassurance, we help families come together, share experiences, and access tailored resources that improve wellbeing.
Our support group, fun days, events, conferences, and meet-ups offer space to connect and learn.
Our YouTube channel features insights from CHI experts, NHS professionals, educators, and families, while our HypoHugs podcast, blogs, newsletters, and social media keep you informed and involved.
Hyperinsulinism Awareness
We are committed to raising awareness of Congenital Hyperinsulinism and hypoglycaemia in babies and children. Through educational resources, social media campaigns, and community outreach, we aim to improve early detection and ensure fast intervention, helping prevent long-term neurological harm.
Our Annual Awareness Day on June 7th shines a spotlight on CHI, promotes early diagnosis, strengthens understanding among healthcare professionals, and amplifies the voices of HI families through shared stories and their call to Aim HI for Hyperinsulinism, advocating for better treatments, increased funding, ongoing research, and compassionate care.
Research & Advocacy
We lead patient-driven research and advocacy to improve care for children and young adults with Congenital Hyperinsulinism. We collaborate with NHS professionals and specialist teams at Great Ormond Street Hospital, Royal Manchester Children’s Hospital, and Alder Hey. As the patient voice for UK and Ireland families, we contribute to policy working groups and campaign in Parliament for better treatments, increased research, compassionate care, and CGM funding
Involving Hyperinsulinism Families
Support Group, Fun Days, Events and Conferences. Tailored resources. Our YouTube channel has videos from CHI experts, NHS professionals, educators and families. Our HypoHugs podcast, blogs, newsletters and social media will keep you updated.
Hyperinsulinism Families, Children and Young Adults are at the heart of everything we do. Through our family surveys, questionnaires and patient-led research. We can ensure that we have their up to date thoughts, feedback and data to be the patient voice in the UK and Ireland and shape our support, resources and research to meet their needs and search for answers.
Hyperinsulinism Awareness
Raising awareness of Hyperinsulinism and Hypoglycaemia in babies. We achieve this through our resources, education, social media campaigns and networking with other Rare Charities and organisations. We collaborate with Genetic Alliance, Eurordis working to improve outcomes for the Rare Community across the UK, Europe and Internationally.
Our annual Hyperinsulinism Awareness Day is on June 7th.
Advocating for Families and Patient Led Research
Advocacy and Research
We are proud to be co-authors of the UK National Guidelines on Hyperinsulinism https://hyperinsulinism.co.uk/research-projects-and-advocacy/ Â
As well as published national surveys conducted in partnership with the Paediatric Society and Hyperinsulinism Charity. These include research on CGM access for patients with recurrent hypoglycaemia and the accuracy and impact of real-time continuous glucose monitoring on quality of life in children with hyperinsulinaemic hypoglycaemia, in collaboration with Great Ormond Street Hospital.
 Our current collaborations include:
- A developmental study with Great Ormond Street Hospital
- Newborn screening research with Royal Manchester Children’s Hospital
- Patient resources with Exeter Genetics
- A neurodevelopmental study with Patient Led Research Hub (PLRH) and CamRARE
Through our Parliament and Advocacy Campaign, we continue to push for better treatments, universal CGM access, and support for the Rare Schools Framework, ensuring the voices of HI families shape the future of care.
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Donate Today
We rely on funds to achieve our goals of supporting families, raising awareness, research, and advocacy.
Get Involved in our Research or Donate
If you are a clinician or researcher, educational professional, student or represent a Rare Charity or organisation we would love to partner with you on research or get your experience and expertise to improve CHI care.
Donations are essential to help us to to achieve our goals of supporting families and bringing them together, raising awareness, patient-led research, and advocacy.
How You Can Help
Dedicated Fundraising for our newly diagnosed, school and young adults packs
Help us to be there at the time of diagnosis, through our newly diagnosed packs. These signpost to our Charity, support group and resources.
School packs contain guidance on Hyperinsulinism, tailored resources, alert cards and information on choosing a school, getting medical needs met at school, SEN support, EHCPs and Individual Health Care Plans.
Young Adult Transition Packs are being co-created with young adults. Containing leaflets and guidance on post 16 options, navigating adult health care and well being.
To sponsor our packs, projects, fun days or conferences email enquiries@hyperinsulinism.co.uk
Fundraising for The Children's Hyperinsulinism Charity
The Children’s Hyperinsulinism Charity is run by CHI family volunteers and relies on funds to achieve our goals of supporting families, raising awareness, research, and advocacy. Planning a fundraiser – we can promote on our social media and provide posters, leaflets, running vests and merchandise.
Flexible Volunteering
We have volunteering opportunities that work around you. Whether you can offer one-off or occasional help, or you would like to be a regular member of our team we would love to hear from you! From HI families and young adults, students, friends and supporters you can make a real difference to the lives of our HI community.
With flexible volunteering and the option to choose what you would like to support us with, we aim to make our volunteering, motivating, rewarding and tailored to you.
Fundraise for CHI
The Children’s Hyperinsulinism Charity is run by volunteers and relies on funds to achieve our goals of supporting families, raising awareness, research, and advocacy.
