Research & Projects
Built with HI Families
Research Projects
Patient‑led research, projects and advocacy for HI families.
Together with families and partners, we drive patient‑led research and projects that support the HI community.
CHC Research & Projects
- Early Development Research in collaboration with Great Ormond Street Hospital
- Neurodevelopmental Research with Patient Led Research Hub
- Genetics Patient Leaflets with Exeter Genetics HI Team
- Newly Diagnosed Project – HI Teams Psychologists
- Feeding Resources – HI Teams Dietitians
- Young Adult Support
- Children in Research Project
- Clothing in HI Babies and Children with Well Cool Clothing
- Parliament Advocacy with Rare4Schools
- Rare Disease Framework – Genetic Alliance
Network & Project Partners
Hyperinsulinism Specialist Teams at Great Ormond Street Hospital, Royal Manchester Children’s Hospital, Alder Hey.
Genetic Alliance UK is an alliance of over 220 organisations, charities and support groups working together to improve the lives of everyone in the UK living with genetic, rare and undiagnosed conditions.
We advocate for fast and accurate diagnosis, good quality care and access to the best treatments. We actively support progress in research and engage with decision makers and the public about the challenges faced by our community. We run Rare Disease UK which provides a united voice for the rare disease community and raises awareness each year
The Patient Led Research Hub (PLRH) supports rare disease patient groups to develop and deliver their own research ideas.
CAM Rare
NEW HIVE member – coming soon
Rare 4 Schools
NEW HIVE member – coming soon
Well Cool Clothing designs adaptive patient clothing that improves comfort, dignity, and clinical efficiency.
Working closely with families, carers, and healthcare professionals, we create practical solutions that make daily care easier while helping children and patients feel more comfortable, secure, and supported.
Get Involved
We always want to hear HI families’ ideas for future projects, research and advocacy, or from those who would like to collaborate with us.
bee rating = HIVE member
= HI Family Recommended
Help Grow the HIVE
Know an organisation that helped your family?
“Every organisation in the HIVE has been checked by our team or recommended by HI families.”
