Research Projects & Advocacy
Driving Change Through Research and Advocacy
Congenital Hyperinsulinism (CHI) is a rare condition but through research, collaboration, and advocacy, we’re working to improve diagnosis, treatment, and long-term outcomes. This page highlights key projects, partnerships, and campaigns led by the charity to raise awareness, influence policy, and ensure that the voices of families affected by CHI are heard.
What we are currently working on!
- Patient Led Neurology Research in collaboration with Patient Led Research Hub (PLRH) and CamRARE.
- Early Development Research Project with Great Ormond Street Hospital
CHC is an investigator in new methods of diagnosis (blood sampling) study in Manchester.
- Tailored resources co-created with Hyperinsulinism children, young adults, siblings and families.
- Parliament Advocacy Project – calling for ringfenced funding, better treatments and compassionate care.
- Continuous Glucose Monitoring – the call for CGM funding – exciting news we have successfully secured some funding and will continue to call for CGM access for all.
- Resources to support the transition from paediatric to adult services.
- Teacher Education Days – details coming soon!
- Rosemary Compassionate Care Awards – in collaboration with Sir Al Aynsley Green
- Genomics England and Generation Study – Hyperinsulinism Newborn Screening
- Collaborating with HI Specialist Teams, Exeter Genetics Team, medical and educational professionals
- Networking
- Family Meet Ups, Conferences, Fun Days – Young Adult Meet Ups
- Supporting families in Scotland, Northern Ireland, and Ireland – new initiatives coming soon
- Reaching new communities
Publications
Standardised practices in the networked management of congenital hyperinsulinism: a UK national collaborative consensus
https://www.frontiersin.org/articles/10.3389/fendo.2023.1231043/full
Paediatric Society and Hyperinsulinism Charity National Surveys on CGM Access for Patients With Recurrent Hypoglycaemia
https://academic.oup.com/jes/article/7/4/bvad021/7008973
Accuracy and impact on quality of life of real-time continuous glucose monitoring in children with hyperinsulinaemic hypoglycaemia
https://www.frontiersin.org/articles/10.3389/fendo.2023.1265076/full
Get Involved
Our research and advocacy work is led by the lived experiences of families affected by Congenital Hyperinsulinism (CHI). Their insights shape priorities, drive innovation, and ensure that care reflects real-world needs. But meaningful change also depends on collaboration, with clinicians, researchers, and funders who share our commitment to improving outcomes.
Whether you’re a parent, carer, healthcare professional, scientist, or supporter, your voice matters. Together, we can drive progress for children, young adults and families living with CHI.
Email enquiries@hyperinsulinism.co.uk or sarah@hyperinsulinism.co.uk