About us
The Children’s Hyperinsulinism Charity was founded in February 2016 by a small group of passionate HI families who wanted to ensure that no one facing Congenital Hyperinsulinism (CHI) would feel alone. Today, our charity is led by five volunteer trustees, all HI family members, who bring lived experience, compassion, and a deep commitment to supporting others on their Hyperinsulinism journey.
Everything we do from research and advocacy to education and events is patient-led and co-created with families. Our work is shaped by the real experiences, questions, and needs of the CHI community, ensuring that support is always relevant, responsive, and rooted in lived experience.
Our mottos reflect this mission:
- Courage, Hope and Inspiration – the qualities we see in individuals with Hyperinsulinism, our CHI Superheroes.
- HI Families for HI Families – our charity is run by families, for families, ensuring that the family voice is heard and every journey supported.
Our Charity Aims:
1. Supporting individuals with Hyperinsulinism and their families
We are here to support families at every stage of their Hyperinsulinism journey. Our initiatives are designed to connect, inform, and involve:
- Family Support Group A safe and welcoming space where families can share experiences, ask questions, and support one another. Join our Support Group: https://www.facebook.com/groups/CHCharityUK/
- Fun Days In-person events that bring families together, giving children with Hyperinsulinism, and their siblings, a chance to build friendships and feel understood.
- Family Conferences Opportunities to meet other families, hear from medical experts, and stay up to date with the latest developments in CHI care and research.
- Hyperinsulinism Heroes Our HI Heroes scheme celebrates the incredible strength of children and young adults living with CHI, as well as the people who support them every day.
- Resources and Information Our website offers a growing library of practical, downloadable resources covering everything from understanding Hyperinsulinism and navigating education and healthcare, to supporting emotional wellbeing, neurodevelopment, and self-advocacy.
2. Support Research
We actively contribute to research that improves understanding and care for individuals with Hyperinsulinism. As members of policy working groups, we champion patient-led research and ensure the lived experiences of HI families shape study design and outcomes. We collaborate with Hyperinsulinism Specialist Teams to provide the patient voice in clinical research, and work alongside other charities and organisations across the rare disease community to support broader research initiatives
3. Raise Awareness
We raise awareness of Hyperinsulinism and the hypoglycaemia it causes, not only among families, but also within medical and educational communities. Our awareness efforts include resource packs, training sessions, and digital outreach through our website, podcast, blogs, and YouTube channel. Everything we produce is designed to improve understanding, promote early detection, and support compassionate care.
4. Advocate for Families
We provide opportunities for families to share their ideas, concerns, and lived experiences, and we make sure those voices are heard. We present family feedback to Hyperinsulinism Specialist Teams, NHS England, and other key organisations. Our current advocacy priorities include:
- Better treatments and compassionate care
- Greater understanding of neurological consequences
- Access to neurodevelopmental assessments
- CGM funding for Hyperinsulinism (updates soon!)
5. End Misdiagnosis and Late Diagnosis
We are committed to improving early detection of Hyperinsulinism to prevent long-term neurological harm. Prompt intervention following early hypoglycaemia detection can be life changing. We’re working with Genetic Alliance, Medics4RareDiseases, and Genomics England to advance screening and diagnostic pathways. We’re proud that seven known Hyperinsulinism genes are now included in the Generation Study newborn screening programme, and we continue to support initiatives that expand early screening and diagnosis.
Our Charity can only continue with the help, support and continued fundraising that individuals with Hyperinsulinism and their families provide, as well as through kind supporters. Please check out our donation pages to find ways to donate and our new dedicated fundraising initiative:
If you know a business or company who would be interested in sponsoring us or helping us with projects please email enquiries@hyperinsulinism.co.uk.
To volunteer or become involved in our projects please email enquiries@hyperinsulinism.co.uk