What We Do

Our Charity was set up in February 2016 after a small group of passionate parents wanted to make a difference to the way support was available to other families of children with Congenital Hyperinsulinism.

 Our Charity aims:

1. Support children, young adults and families with Hyperinsulinism.
2. Patient Led Research and Projects.
3. Resources and information on Hyperinsulinism.
4. Advocate for Families – calling for better treatments, outcomes, and CGM funding.
5. Raise Awareness of Hyperinsulinism and Hypoglycaemia – campaign for early detection and newborn screening. 

We Support families through our Facebook Support Group, Family Fun Days, and Family Conferences. We bring families together so they can form life-long friendships and be part of a HI community.

What we are working on:

• Patient Led Neurology Research in collaboration with Patient Led Research Hub (PLRH) and CamRARE.
• Early Development Research Project with Great Ormond Street Hospital

• CHC is an investigator in new methods of diagnosis (blood sampling) study in Manchester.

• Tailored resources co-created with Hyperinsulinism children, young adults, siblings and families.
• Parliament Advocacy Project – calling for ringfenced funding, better treatments and compassionate care.
• 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.
• Resources to support the transition from paediatric to adult services.
• Teacher Education Days – details coming soon!
• Rosemary Compassionate Care Awards – in collaboration with Sir Al Aynsley Green
• Genomics England and Generation Study – Hyperinsulinism Newborn Screening
• Collaborating with HI Specialist Teams, Exeter Genetics Team, medical and educational 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

For the latest updates on our current projects visit our research and advocacy page:

 https://hyperinsulinism.co.uk/research-projects-and-advocacy/

Contact us: 

enquiries@hyperinsulinism.co.uk

Support Group: https://www.facebook.com/groups/CHCharityUK/

For ways you can become involved or support us go to: https://hyperinsulinism.co.uk/how-you-can-help/volunteer/

The Children’s Hyperinsulinism Charity is run entirely by volunteer trustees and relies completely on charitable support to gain funds to help us achieve our goals of helping families and supporting research.

The Children’s Hyperinsulinism is registered with The Charity Commission England and Wales registration number is 1165562 

To find out more: https://register-of-charities.charitycommission.gov.uk/charity-details/?regid=1165562&subid=0

Policies: For a copy of our policies or any other queries please email enquiries@hyperinsulinism.co.uk