News & Events
Understanding and Improving Neurodevelopmental Outcomes in Children with Congenital Hyperinsulinism
Children with congenital hyperinsulinism face a significantly higher risk of neurodevelopmental difficulties, yet there are no consistent pathways for assessment, follow-up, or support.
Our patient-led project aims to change that. We’re working to ensure that every child with HI has access to early developmental screening, ongoing monitoring, and the right interventions at the right time.
Alongside families, clinicians, and researchers, we’re also exploring the impact of hypoglycaemia on the brain and possible genetic links.
Together, we’re building the evidence needed to shape national standards of care, improve understanding of HI, and give families the answers they’ve been waiting for.
Sarah, Amanda and Chloe will be presenting and exhibiting at the RARESummit. Hyperinsulinism families will be fully involved in the project.
We are very grateful to Laura and Fern at the Patient Led Research Hub (PLRH) and CamRARE for making this possible.
Want to get involved? We would love to hear from you: enquiries@hyperinsulinism.co.uk
After months of research, creative planning, and inspiring conversations, the team has curated a truly unique programme for this year’s summit.
You can look forward to:
- World-class speakers, panel discussions, and interactive workshops
- Cutting-edge posters and exhibitors showcasing the latest innovations
- A focus on co-creation and patient-driven insights, bringing together the whole RARE community — from patients and advocates to researchers, clinicians, scientists, and innovators
The agenda reflects the diverse voices and whole-person, whole-community approach that makes RAREsummit such a special gathering.
Find out more: https://www.camraredisease.org/raresummit25-programme/
Hyperinsulinism Awareness Day 7th June
This year’s theme is Support that Shapes the Future, because from day one, our aims for Hyperinsulinism have been built by listening to and learning from individuals with Hyperinsulinism and their families.
Let’s celebrate our HI community and how every conversation, every story, and every family can shape the future of Hyperinsulinism.
#AimHIforHyperinsulinism #AimHITogether
We’re inviting families, professionals, networks, and rare disease partners to join in our second Awareness Day 7 June.
Share when/how we supported you and your Aims for HI
E.g.: “We found The Children’s Hyperinsulinism Charity in 2013, support meant we never felt alone and later helped us to get our child’s needs met at school. Our Aim for HI: newborn screening and better treatments.
” We want medical professionals to recognise the signs and symptoms of hypoglycaemia in babies“
Here’s how to take part:
1.Download your printable sign.
CHC Awareness Day Signs to Download
Awareness Day Signs Word Version CHC
2.Complete the sections that apply to you or use the blank sign.
3.Take a photo of you (and your team or family) holding it.
4.Post on 7 June (Awareness Day) or email your photos in advance to sarah@hyperinsulinism.co.uk so they can be scheduled on.
Tag: The Children’s Hyperinsulinism Charity @CHCharityUK and use these hashtags:
#AimHITogether #AimHIforHyperinsulinism
We can be found on the following social media
Thank you for helping us to “AimHI” Together.
About Hyperinsulinism Awareness Day
Hyperinsulinism Day was launched on 7 June 2024 by The Children’s Hyperinsulinism Charity. We wanted to raise awareness, involve everyone and give our families a voice so that each year they can shape the theme and the focus. The Children’s Hyperinsulinism Charity is a parent run charity of five volunteers all of whom have children with Hyperinsulinism. The Awareness Day is another way our Charity shows that we are the patient voice and are independently responsive to individuals with Hyperinsulinism and their families. They are at the heart of everything we do.