About us
Our Charity was set up in February 2016 by a small group of passionate parents who wanted to ensure support was available to families of children with Congenital Hyperinsulinism. Today we have five volunteer trustees, who share the same passion to ensure no family is alone on their Hyperinsulinism journey.
We have two mottos:
- Courage, Hope and Inspiration = these are the attributes we see in individuals with Hyperinsulinism, who we often refer to as our CHI Superheroes!
- HI Families for HI Families = our Charity is run by Hyperinsulinism families for individuals with Hyperinsulinism and their families.
Our Charity Aims:
1. Supporting individuals with Hyperinsulinism and their families
- Family Support Group – connects families together to share experiences in a safe environment.
- Support Group: https://www.facebook.com/groups/CHCharityUK/
- Fun Days – bring families together so they can meet in person and Hyperinsulinism children and siblings, can form friendships.
- Family Conferences – another opportunity to bring families together, to find out more about Hyperinsulinism, ask the experts and discover the latest news and updates.
Hyperinsulinism Heroes – Our HI Heroes scheme recognises the achievements of those who make a difference in the lives of the children and young adults we support, as well as celebrating the achievements of our CHI superheroes!
Resources and Information – our new look website is packed with information and downloadable resources designed to combine practical information such as Hyperinsulinism information, advice on education, finance, and getting medical needs met. As well as resources on supporting emotional and mental health, neurodevelopmental issues, and developing self-advocacy skills.
2. Support Research
We do this in a variety of ways, we are members of policy working groups working on initiatives such as patient led research. We also support Hyperinsulinism Specialist Teams by providing the patient voice to research. We also work closely with other Charities and organisations who are working on wider research in the rare disease community.
3. Raise Awareness
As well as raising awareness of Hyperinsulinism and the Hypoglycaemia it causes, we produce resources to raise awareness amongst medical professionals and educational professionals. This includes our resources packs, training sessions and through our website, podcast, blogs and YouTube Channel.
4. Advocate for Families
We provide families with opportunities to voice their ideas, thoughts and concerns relating to Hyperinsulinism. We then present these to the Hyperinsulinism Specialist Teams, NHS England and other organisations to get their voice heard. We are currently calling for better treatments, more understanding of neurological consequences and neurodevelopmental assessments, as well as successfully achieving CGM funding for Hyperinsulinism – details coming soon!
5. End Misdiagnosis and Late Diagnosis
We are constantly looking at was to improve better detection of Hyperinsulinism. We know that if hypoglycaemia is detected early, prompt intervention occurs minimising the risk of neurological harm. We are currently working with Genetic Alliance, Medics4RareDiseases and Genomics England. We are delighted that seven of the known Hyperinsulinism genes are being screened for in The Generation Study newborn screening programme. We are working on other initiatives to improve early detection and screening.
Our Charity can only continue with the help, support and continued fundraising that individuals with Hyperinsulinism and their families provide, as well as through kind supporters. Please check out our donation pages to find ways to donate and our new dedicated fundraising initiative:
If you know a business or company who would be interested in sponsoring us or helping us with projects please email enquiries@hyperinsulinism.co.uk.
To volunteer or become involved in our projects please email enquiries@hyperinsulinism.co.uk