Children's Hyperinsulinism Charity UK and Ireland

Happy International Women’s Day to all the courageous girls with HI 💗💞 and to the mothers, sisters, doctors, and friends who support us all! 🎉💗”

Thank you to our wonderful volunteer Katie for sharing this message, and to all the incredible women who help to shape our work. 💞

@CHCharityUK is a member of Hidden Disabilities Sunflower, with a specially designed card to help Hyperinsulinism Heroes like Daisy access support🌻

📩 Order: enquiries@hyperinsulinism.co.uk
🔗 Learn more: https://youtu.be/4iMjQWXKndc

#BeSeenWithSunflower #HyperinsulinismUK

Are you in hospital with your child and confused about what support is available?

We have collected key information from all the major UK children's hospitals here ➡️ buff.ly/EwaM0vl.

📣Today, we are proud to be featured in The Guardian newspaper, raising awareness of Hyperinsulinism and the families supported by The Children’s Hyperinsulinism Charity.

If you’re picking up a copy today, let us know if you spot us! 📰

#ThinkHypoglycaemiaThinkHyperinsulinism

HI Hero Carter decided to share a little World Book Day magic just before bedtime, choosing his Room on the Broom pj’s and his witch toy. Great choice, Carter. We love how kind Witch is, always making sure there’s room for all her friends on the broom.🧙‍♀️💓✨
#WorldBookDay

Moving from paediatric to adult CHI care is a big milestone.

In our video, our Patron, Dr. Pratik Shah, explains why early planning matters, what national guidance recommends, and how joint clinics can make the process smoother.

https://ow.ly/mwsC50YnF38

More info:
https://ow.ly/hWjt50YnF37

Happy World Book Day! 📚
We’re celebrating stories that help HI children feel confident and understood.
Our HI booklets and Chloe the Rabbit storybook support young people in understanding and explaining Hyperinsulinism.
https://ow.ly/mcKy50YnEAg
https://ow.ly/JW0L50YnEAf

This Saturday, we will be in The Guardian helping raise awareness of Hyperinsulinism, the leading cause of persistent hypoglycaemia in newborn babies. Early detection is crucial to minimise the risk of neurological harm, which is why our message is:
Think Hypoglycaemia. Think Hyperinsulinism.

After an acquired brain injury, a child’s hearing may test as “normal”, but that does not always mean listening feels normal. The brain is responsible for processing sound. It helps us filter background noise, follow conversations, understand tone, and remember what we have heard.

BPS Publications Aims There is a progression through childhood from being provided medications by caregivers to having to take responsibility for medications yourself, but little is known about when the transition o...

We know teenagers access medicines over the internet (see bpspubs.onlinelibrary.wiley.com/doi/10.1002/...) and we know that there are fake/falsified medications that are peddled that way (see www.gov.uk/drug-safety-... so please be careful out there!!

It’s been a busy and inspiring few days for our team, connecting with partners across the rare disease community for #RareDiseaseDay2026. You would have found us at Kings Cross station with @lifearc.bsky.social and at Guy’s and St Thomas’ NHS Foundation Trust with @uniquecharity.bsky.social
.

Our Spring/Summer 2026 magazine celebrates action, rights and 50 Years of impact - Children's Health Scotland Spring/Summer 2026 Magazine celebrates 50 years of Children’s Health Scotland with stories, rights, and young voices.

Our Spring/Summer 2026 Magazine is here! Packed with young voices, health rights in action, and inspiring stories as we mark 50 years of Children’s Health Scotland. Read about Health Rights Defenders, FLOURISH, SMS Programmes and the carers’ we support tinyurl.com/CHS-MAG-SS26
#HealthRightsAware

Happy World Wildlife Day! 🌍🐾
Animals and nature mean so much to HI Heroes, whether its the joy and curiousity of spotting wildlife on days out or the pets that bring comfort and calm. These moments remind us of the importance of protecting wildlife for future generations.
🐘🐎🐕🐱🦎
#WorldWildlifeDay

Life as a teen with Hyperinsulinism can feel like juggling so much: exams, friendships, relationships, independence... all while managing hypoglycaemia, medications & the demands of HI.
Well-being tips & resources:
https://hyperinsulinism.co.uk/coping-with-hyperinsulinism/
#TeenMentalHealthDay

Rare Disease Day was amazing 💛 Thank you for every story, share, and like!

March is full of ways to get involved: nominate your HI Hero, ask your questions for British Science Week, and join the conversation on teen mental health & development.

Happy Rare Disease Day! @chcharityuk.bsky.social

Since I was born, I have had Congenital Hyperinsulinism (CHI), a condition which was 1 in 28,000, (1/4)

#rarediseaseday #hyperinsulinism

Thank you, St Albans Cathedral, what a lovely way to end Rare Disease Day with a quick trip to St Albans Cathedral for the Children's Hyperinsulinism Charity and Rare Disease Day! @geneticallianceuk.bsky.social Cambridge Rare Disease Network

#rarediseaseday #stalbanscathedral #lightuprare

Families affected by Hyperinsulinism are often told
“Cross that bridge when you come to it.”
When they ask about neurodevelopment.

Then endure:
⏳ years on waiting lists
🔍 years of uncertainty, searching for answers

#RareEquity = questions answered/support secured
#RareDiseaseDay

💙 Tomorrow, St Albans Cathedral lights up for The Children's Hyperinsulinism Charity and Rare Disease Day!

It shines for the Hyperinsulinism community and the 300 million people worldwide living with rare conditions.

⭐ Thank you, St Albans Cathedral
#RareDiseaseDay #LightUpRare

✨ Amelia’s Hyperinsulinism Journey

#CHISuperhero Amelia is a true warrior who has faced Hyperinsulinism with incredible Courage, Hope, and Inspiration. In this video, she shares her journey from birth to now, raising awareness for #RareDiseaseDay #MoreThanYouCanImagine

"CHI doesn’t define me, but it’s a big part of my life. I face learning, developmental & medical challenges, but I am so much more."

💓 I am the beat of a drum
💓 I am the song that’s sung
💓 I am more than you can see
💓 I am me

#RareDiseaseDay #AimHIforHyperinsulinism

Imagine discovering your newborn is battling life-threatening hypoglycaemia.

Lengthy hospital stays follow. Bonding is disrupted. Feeding plans change. The precious early moments you imagined become a new reality: glucose monitoring, medications, and complex care.

#RareDiseaseDay #Hyperinsulinism

✨ Charlie has been taking part in trials to help find better treatments and deepen understanding of Hyperinsulinism, giving families hope for the future. He also had his feeding button removed after 10 years of it being his lifeline.

We are so proud of you, Charlie 🤩

#RareDiseaseDay #RareEquity

Hyperinsulinism: More Than You Can Imagine
"I’m Cillian. I have my blood sugars checked, take my meds & get fed through my PEG tube. I see more medics than most kids & manage 6 more medical conditions. I have more strength and resilience than you can imagine." #RareDiseaseDay

HI Katie, a young adult with Hyperinsulinism shares her thoughts on fairer access to Continuous Glucose Monitors. She highlights their benefits & shares her experience of using a CGM at Great Ormond Street Hospital to help get her on the right medication dose.

#RareDiseaseDay #EquityForRare

"Medicine, feeds, tubes, heel pricks, endless calls… the fear of our child going blue. This is our ‘normal’ with Hyperinsulinism. People see a healthy-looking child, but not the daily reality."

Equity means HI families get support, care, and advocacy so they are never alone.

#RareDiseaseDay

💓 More hair compliments than you can imagine: Treating Hyperinsulinism can lead to some surprising side effects! The first-line medication Diazoxide can cause hypertrichosis. Whilst this can be troublesome, for CHI Superhero Teddy, we understand why this leads to so many compliments #RareDiseaseDay

Liam was born with a rare, complex syndrome called Kabuki Syndrome, which affects roughly 1 in 32,000 people worldwide. The most challenging and stressful issue for Liam has been Hyperinsulinism, causing his blood sugar levels to drop dangerously low #RareDiseaseDay

💙Rare Disease Day – Hyperinsulinism: More Than You Can Imagine
CHI mum Alex: "More consultants than we could have imagined, but also more bravery, more achievements, and more incredible friends. We’re proud to be rare."
#RareDiseaseDay #AimHIforHyperinsulinism

Happy Lunar New Year! 🔥🐴 Wishing you happiness, peace, and prosperity in the Year of the Horse #HappyChineseNewYear #YearOfTheHorse #LunarNewYear