Research Projects & Advocacy
Our Charity is run by Hyperinsulinism families for Hyperinsulinism families, what do we mean by that?
We are here for you, we want to know your thoughts and ideas so that our Charity is making a real difference to your quality of life, advocating for your needs, and getting the questions you have answered. So, please keep letting us know what you want from your Charity:
What we are currently working on!
- 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.
- We have partnered with Cambridge Rare Disease Network CamRARE to offer ‘This is Me’ patient passports
- Website Update – New website resources – developing self advocacy skills, addressing wellbeing, post 16 options and more!
- Tailored Resources – designed to meet different ages and needs.
- Teacher Training and Education Days – details coming soon!
- Cambridge Rare Disease Research Network – Patient led Research – details soon.
- Genomics England – Hyperinsulinism Newborn Screening
- Medscape Education and Awareness Programme.
- Pursuing families requests for improved screening for neurological consequences and hearing, vision, dental checks. Following our what HI Families want from medical professionals survey
- Working with HI Specialist Teams and medical 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
How can you help?
- Keep providing ideas and asking questions!
- Take part in surveys and questionnaires (coming soon)
- Share our social media posts – we are on Facebook, Instagram, LinkedIn, X and YouTube (click icons below)
- Volunteer for us (regularly or one-off events and projects)
- Fundraise for us
- Sponsor our projects, conferences or training days.
- Know potential sponsors? or anyone who may help us? share our contact details with them.
- Donations of raffle prizes, toys for our festive packs or children’s competition prizes
- Raise awareness of the Charity and the work we do.
- Share your stories, experiences and give us feedback.
Email enquiries@hyperinsulinism.co.uk or sarah@hyperinsulinism.co.uk
The Children’s Hyperinsulinism Charity is run by five volunteer trustees Sarah, Amanda, Kirsty, Ciara, Steff and relies on your support and fundraising. Thank you!