For Professionals

Research, Advocacy and Collaboration

As a charity run by families for families, we believe the most effective change happens when professionals and patients work together. We actively collaborate with clinicians, researchers, and national bodies to improve care, access, and outcomes for people living with Congenital Hyperinsulinism.

Recent initiatives include:

CGM Access Campaign – National surveys and successful funding advocacy for real-time glucose monitoring
Peer-Reviewed Publications – Co-authored research on CGM accuracy, quality of life, and standardised CHI care pathways
Early Development Research in partnership with Great Ormond Street Hospital
Patient-Led Research in Neurodevelopment – In partnership with Patient Led Research Hub and Cambridge Rare Disease Network
Newborn screening project in partnership with Royal Manchester Chidren’s Hospital
Genetics Patient Information in partnership with Exeter Genetics Team
This is Me’ Patient Passports – Developed with CamRARE to support personalised care
National Working Groups – Contributing to policy development and clinical guidance

Explore our full research and advocacy work

Get Involved

We actively support research projects, contribute to policy working groups, and provide the patient voice in national initiatives. If you’re a clinician, researcher, or healthcare professional interested in partnering with us, we’d love to hear from you.

For clinical advice on a patient with Hyperinsulinism, we recommend reaching out to one of the UK’s CHI Specialist Centres, commissioned by NHS England.

We’re proud to have co-authored the UK National Guidelines for Hyperinsulinism, which you can view below.