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Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 14h

In Hyperinsulinism there is an absence of ketones & therefore a reliance on the circulating blood glucose to protect the brain it is therefore crucial to keep blood glucose level above 3.5 mmol/l
🔑Understanding HI is key to reduce risk of harm
https://hyperinsulinism.co.uk/what-is-hyperinsulinism/

Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 1d

Hyperinsulinism is the most common cause of persistent low blood sugar in the first three months of life.

✅Early detection & prompt intervention are vital to protect the brain & reduce the risk of harm.
✅Awareness of Hyperinsulinism & the symptoms of hypoglycaemia in babies can save lives

Reposted by Children's Hyperinsulinism Charity UK and Ireland

Institute of Health Visiting @ihealthvisiting.bsky.social · 2d

Help shape future #research on babies’ and young children’s development:
We’ve launched a new survey to better understand what matters most for babies, young children, and their families, and we need your expertise. Please complete the survey here: www.surveymonkey.com/r/Developing...

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Reposted by Children's Hyperinsulinism Charity UK and Ireland

Rezolute Medical Affairs @rzltmedaffairs.bsky.social · 16d

What a weekend for #Rezolute Medical Affairs! 🌍 Our team proudly represented at #ASPED2025 (Dubai), #SCOPE (Long Beach), and #AAP2025 (Denver)—sharing insights on congenital hyperinsulinism and ersodetug (RZ358). Grateful to all who engaged with us! #RZLT #ersodetug #EndoSky #RZLTMedAffairsInAction

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Reposted by Children's Hyperinsulinism Charity UK and Ireland

use MY data @usemydata.bsky.social · 16d

Be in the room where ideas begin!

At @camrare.bsky.social #RAREsummit25, 3 patient voices will pitch research ideas shaped by their communities & lived-experience priorities in the Rare Disease Research Network Showcase.

Tickets: www.camraredisease.org/raresummit25/

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Reposted by Children's Hyperinsulinism Charity UK and Ireland

Rezolute Medical Affairs @rzltmedaffairs.bsky.social · 2d

To learn more about our sunRIZE Phase 3 preliminary demographic and baseline clinical characteristics, please check out our poster on our website: rezolutebio.com/wp-content/u... #SPES2025
#RZLT #CongenitalHI #raredisease #hyperinsulinism #ersodetug #PedSky #EndoSky #MedSky

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Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 2d

📢 Student volunteer, Mihika, is highlighting some of the common misconceptions surrounding Hyperinsulinism.

Misunderstandings about HI can make it harder to access the right care & support. By separating fact from fiction, we can help build greater awareness & understanding for the HI community.

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Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 3d

📣ADHD is a complex neurodevelopmental condition that can impact learning, relationships, and daily life.

Long-term studies of Hyperinsulinism have revealed an increased rate of difficulties that affect learning and development, including attention difficulties and ADHD.

#ADHDawarenessmonth

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Reposted by Children's Hyperinsulinism Charity UK and Ireland

Child Brain Injury Trust UK @cbituk.bsky.social · 4d

From 20–26 October, we’re encouraging families, schools, and communities to help children ‘Be Seen, Not Hurt’ as the nights draw in. This year’s simple pledge is to have a conversation with a young person about why it’s important to be visible when out and about. Find out more: buff.ly/P5PnlJl

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Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 4d

It is important to know that in babies, hypoglycaemia can be hard to detect. Watch for feeding difficulties, breathing problems, seizures, or unresponsiveness, these could signal dangerously low blood sugar.

🔄 Share to help us raise awareness
#Hyperinsulinism #Hypoglycaemia #HypoAwarenessWeek

Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 7d

🚨Save Our Children’s Rights:"The Govt is considering reforms that could strip away legal rights & restrict access to EHC plans. We need a SEND system that works as it should & where the law is followed. Not for legal protection to be removed.
✍️ https://petition.parliament.uk/petitions/711021

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Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 7d

📣In Hyperinsulinism, feeding isn’t just a routine; it’s a life-saving treatment to keep blood sugars stable. But many children face challenges like reflux, vomiting, feeding aversion, or tube feeding.
Find out more:
🎥Watch Dietitians Annaruby & Barbara: https://youtu.be/VxD9Yqe_LFI

Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 7d

📣This Hypo Awareness Week, hear from our CHI Superheroes!
They’re sharing this guide on what they want you to know about supporting a child or young adult with Hyperinsulinism, a condition where the body overproduces insulin, leading to life-threatening hypoglycemia.
#HypoAwarenessWeek

Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 8d

✨ Elsie’s journey began with a diagnosis of Beckwith-Wiedemann syndrome and she was later diagnosed with Hyperinsulinism (HI)
With a feeding tube, a strict schedule, regular injections, and countless blood glucose checks.
"Elsie faces HI with courage & we couldn't be prouder"🥰
#HypoAwarenessWeek

Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 8d

🎧 New HypoHugs Episode

Liam chats with Anna, an adult living with Hyperinsulinism, as she shares her honest thoughts on the challenges transitioning from child to adult care, the lack of support for adults with HI, and strategies that help her.

✨ Search 'HypoHugs' wherever you get your podcasts!

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Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 9d

🥳 Thank you, Warrington Guardian for sharing this story!
Joanne & Gavin Hepherd-Hall awarded Abi a Hyperinsulinism Hero Award on behalf of Children's Hyperinsulinism Charity UK and Ireland for her remarkable care of their daughter Ibbie

https://ow.ly/accc50X80EY
,

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Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 9d

✨ Amelia has always faced Hyperinsulinism with incredible Courage, Hope, and Inspiration.
For Hypo Awareness week we are sharing her video story.
https://youtube.com/shorts/sTB2Lk9UThM?si=wgXJrW_kSKje-BQ0
#HypoAwarenessWeek

Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 9d

📣Why do we call them CHI Superheroes?

Because life with Hyperinsulinism can be relentless.
It’s blood checks, treatments & hospital stays.
It’s plans that change in a moment.
It’s explaining what HI means (again & again!)
It’s sleepless nights, worry, and constant awareness.

🥰CHC supports them

Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 10d

CongenitalHyperinsulinism significantly impacts daily & family life. We raise awareness of Hyperinsulinism for CHI Superheroes like William so that the focus and momentum continues to achieve better treatments, outcomes & quality of life.
https://hyperinsulinism.co.uk/what-we-do/
#HypoAwarenessWeek

Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social · 10d

🚨 This week is Hypo Awareness Week 🚨
We are raising awareness of the signs & symptoms of Hypoglycaemia in babies with Hyperinsulinism, as early detection means faster intervention & diagnosis, helping to prevent neurological harm.
www.hyperinsulinism.co.uk
#Hyperinsulinism #HypoAwarenessWeek

Reposted by Children's Hyperinsulinism Charity UK and Ireland

insulinoma.bsky.social @insulinoma.bsky.social · 12d

Two years ago, Ian underwent major surgery, for an insulinoma. Tomorrow he runs the AJ Bell Great Scottish Run Half Marathon his first ever half marathon, support Ian by helping him to reach his fundraising goal.
www.justgiving.com/page/ian-hou... #insulinoma

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Reposted by Children's Hyperinsulinism Charity UK and Ireland

James Lind Alliance @jameslindalliance.bsky.social · 13d

The Childhood Deafness and Hearing Loss PSP has published the top priorities for future research aimed at improving our understanding of childhood hearing loss.

➡️Top 10 priorities ranked by adults: buff.ly/GQq4qNB
➡️Top 10 priorities ranked by children: buff.ly/1hR5qEu

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Reposted by Children's Hyperinsulinism Charity UK and Ireland

DigiBete @digibete.bsky.social · 13d

✨ New DigiTalks!✨
📅 23 Oct | 🕕 6pm
Join us for our next #DigiTalks.

💙We’ll explore the Coping with Diabetes tool in the #DigiBeteApp
👩‍👩‍👦 Hear from young people & families with #T1D
👉 Join psychologists who co-designed this tool for a live Q&A

Sign up here ! www.digibete.org/digitalks/

A screenshot of the DigiTalks poster: Coping with Diabetes DigiTalks event on 23rd October from 6 to 7pm with live discussions, community experiences and expert psychologists, available via social media streaming

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Reposted by Children's Hyperinsulinism Charity UK and Ireland

Special Needs Jungle @spcialndsjungle.bsky.social · 12d

Only 5 days left until the petition closes on 9th October. Will you help us to protect the rights of children with special educational needs and disabilities? It would be amazing if we could get over 130,000 signatures. #SaveOurChildrensRights

www.saveourchildrensrights.o...

Protect the law for children and young people with special educational needs and disabilities

The legal rights of children with special educational needs and disabilities (SEND) are under threat. We must act now.

www.saveourchildrensrights.org.uk

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Reposted by Children's Hyperinsulinism Charity UK and Ireland

Confident Conversations Charity @confidentconvos.bsky.social · 11d

It's #HealthLiteracyMonth. We have loads of info on how to manage when your child is in hospital. We're taking you through the whole experience: from admittance to discharge.

Today, what happens in hospital: buff.ly/Zj4ek3d

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