Dedicated Fundraising
Any donations received using the references below will be ringfenced solely for the purpose they have been assigned, with regular updates on amounts raised and confirmation of what it has been used for.
How to donate: Click on the Donate Button at the top of the website
Paypal: https://www.paypal.com/paypalme/CHCharity
Bank Transfer: Please email sarah@hyperinsulinism.co.uk for our bank details
Newly Diagnosed Packs
The time of diagnosis can be a particularly vulnerable and overwhelming period in the Hyperinsulinism journey. These packs are our way of letting new HI families know they are not alone! The packs signpost to our Charity, support group and website.
We currently send out packs to the HI Specialist Teams at GOSH, Royal Manchester Children’s Hospital and Alder Hey. As well as to BARTS (Royal London Hospital), Royal Hospital for Children Glasgow, Royal Hospital for Children Edinburgh, Royal Belfast Hospital, Temple Street Hospital Dublin, Children’s Health Ireland Crumlin Hospital, Dublin. We hope to extend this to more hospitals and particularly the sites involved in the Genomics England newborn screening programme, who are currently screening for Hyperinsulinism.
The packs contain a Charity welcome letter, a letter from a HI family to say hello and share their experiences, toiletries, and Charity leaflets.
These packs cost £8 each.
When donating please use reference ‘NDP’
Festive Packs
Being in hospital and away from home, family, friends, and school is particularly hard during the month of December.
We aim to reach these children and bring them some cheer with our Festive packs. These currently contain a Charity Bear, Water bottle, Chloe the Rabbit book and leaflets. We would love to make these suitable for all age groups by including a voucher.
By donating to these packs, you will help us to make these packs suitable for all ages and raise some festive cheer.
These packs cost £20 each and will be sent to the above-named hospitals.
When donating please use reference ‘Festive’
School Packs
These family and school packs are designed to provide the information needed to get medical needs met at school.
They cover the legal aspects, school-home relationship, how Hyperinsulinism can impact on learning, plus resources such as Chloe the Rabbit storybook, notebook and pens, lanyard and alert cards.
These packs cost £20 each.
When donating please use reference ‘ School Pack’
Resources
We’re currently working on creating resources to assist our CHI Superheroes in understanding their condition, nurturing their emotional well-being, and providing enjoyable activities during their hospital stay.
Additionally, we’re looking to broaden our support by developing educational materials for families, young adults, healthcare professionals, and educational settings. This will involve updating our website to offer downloadable resources and providing informative packs.
We will also use this to fund alert cards and sunflower cards.
When donating please use reference ‘Resources’
Patient Led Research Project
At CHC, families are not just participants in research, they are the driving force behind it. In collaboration with the Patient Led Research Hub (PLRH), we are working together to explore the neurodevelopmental outcomes of children with Congenital Hyperinsulinism. This project was born directly from the questions raised by parents and carers who want to understand why some children face lasting developmental, cognitive, or sensory challenges while others do not, and how we can better support them at every stage of life.
By placing families at the heart of the research, we are ensuring that the issues that matter most from learning and memory difficulties, to the higher incidence of autism and ADHD, to the need for routine assessments at key milestones, are properly investigated. This unique, patient‑led approach means your voices shape the questions, guide the priorities, and ultimately influence the standards of care that will be developed.
The benefits for families are clear: earlier recognition of challenges, tailored support at the right time, and improved quality of life for children as they grow. The findings will help create a national standard of care for neurodevelopmental assessment and follow‑up, ensuring that every child with CHI has access to the monitoring, resources, and interventions they need. Together, we are building knowledge, raising awareness, and changing the future of care because every contribution counts.
When donating use reference ‘Research’
Fun Days and Conferences
We love to put these events on for families, but they do require a lot of funding!
We want to provide more events and opportunities to meet up across the UK and Ireland as well as more events for older children and young adults.
When donating use reference ‘Families Together’.