Glut1 Deficiency UK

14/09/2026

💛🎒 REMINDER – Supercarers Zoom Chat TOMORROW! 🎒💛

Just a little reminder that our Going Back to School Supercarers Zoom Chat is tomorrow night, Tuesday 15th September at 8pm! 😊

A relaxed, parent-to-parent chat about all things school — keto lunches, support plans, communication, settling back into routines and anything else that comes up.

And because it’s Jeans for Genes week… 👖🧬
Wear your denim tomorrow night! 💛

Jeans for Genes is the annual fundraising event supporting the genetic condition community, so let’s show our support and get our denim on! 💙

📅 Tuesday 15th September
⏰ 8pm
💻 Supercarers Zoom Chat

Come along for a chat, listen, share ideas — or just pop in and say hello. 💛

Message below for Zoom link👇

14/09/2026

👖💙 It’s Jeans for Genes Week!

At Glut1 Deficiency UK, we know the impact of rare genetic conditions. That’s why this week, we’re proudly supporting Jeans for Genes, raising awareness and vital funds for children and young people living with genetic conditions.

👖💙 At our Supercarers Chat on Tuesday, we’re inviting everyone to wear their jeans and show their support. And whether you’re joining us on Tuesday or not, send us a photo of you in your jeans this week - we’d love to see them and share your support! 📸

Together, we can help raise awareness of Glut1 and the children and families living with genetic conditions across the UK.

09/09/2026

🎒💛 Supercarers Zoom Chat – Going Back to School 💛🎒

It’s that time of year again… back to school! 😅

We thought it would be lovely to have a relaxed Supercarers chat about all the things that come with getting our children back into school routines.

This one is parent-to-parent 💛 — there won’t be a professional giving a talk or presentation. It’s simply an opportunity for parents to share their own experiences, ideas, tips and things that have worked (or maybe haven’t worked! 😂) for their families.

We can have a chat about things like:

🥪 Ketogenic lunches & food in school
What do you send in? How does your school manage the ketogenic diet? Any good lunch ideas to share?

📚 IEPs & support plans
What have you included? What support has worked well for your child? Any tips for working with school?

💬 Communication & support
What helps your child communicate and take part in the school day?

🧩 Getting settled back in
New teachers, new classrooms, changes in routine and all the little things that can make returning to school easier (or harder!).

And of course, anything else that comes up in the chat! 😊

There’s no pressure to share and no silly questions — come along for a chat, listen to other parents, share your own experiences and hopefully pick up some ideas along the way.

Sometimes the best tips come from another parent who has already been through it. ❤️

PS: Wear something denim to mark Jeans for Genes week which is the annual fundraising event for the genetic condition community. 👖 🧬

📅 Date: Tuesday 15th September
⏰ 8pm
💻 Supercarers Zoom Chat
👇🏻Message below for the link

10/07/2026

It’s International GLUT1 Awareness Day! 🎉. Thank you to everyone who has joined us to raise awareness and celebrate 🎉On this day we pay tribute to everyone living with GLUT1 Deficiency all over the world.

All the GLUT1 organisations around the world have come together to create a video, highlighting the hopes and dreams of people living with GLUT1 DS. The video shows that it doesn’t matter where we are in the world, we are united in our commitment to GLUT1 DS. Our shared experiences bring us together.

Today we also celebrate the families, health professionals, researchers, caregivers and support organisations that, with commitment, work and hope, form part of this immense global community.

Supporting the GLUT1 community is vital for understanding and advancing research to improve lives.
Glut1 Deficiency Syndrome is a rare genetic disorder that impairs brain metabolism and often results in a range of neurological symptoms such as seizures, speech and movement disorders, and developmental delays.

Increased awareness promotes early diagnosis and better outcomes.

We can create a supportive network that not only educates the public but also provides resources and hope for families navigating this challenging condition.

Help us by sharing our message today!

03/07/2026

Our GLUT1 world map is filling up!

https://datastudio.google.com/u/0/reporting/7c867b81-1e47-4035-b442-c435ada05326/page/nKV0F?s=lHJ2eQhvWgU

One week to go till International GLUT1 Awareness Day, we want to know where in the world is GLUT1DS?

Help us light up the globe and showcase the true global footprint of the GLUT1 community. Together, we can show that no matter where we live, we are connected, visible, and stronger as one.

Please fill out the Form to show where you are.

https://docs.google.com/forms/d/e/1FAIpQLSfpR4xYBmqoS7D2xbOEMzU0lZ5tKHppzgCaL8eZb1xOU6Ue0A/viewform

Please note: All entries are anonymous, only location will be shown.

Data Studio turns your data into informative dashboards and reports that are easy to read, easy to share, and fully customizable.

01/07/2026

International GLUT1 Awareness Day is coming soon! Ahead of 10th July we want to know where in the world is GLUT1DS?

Help us light up the globe and showcase the true global footprint of the GLUT1 community. Together, we can show that no matter where we live, we are connected, visible, and stronger as one.

Please fill out the Form to show where you are.

https://docs.google.com/forms/d/e/1FAIpQLSfpR4xYBmqoS7D2xbOEMzU0lZ5tKHppzgCaL8eZb1xOU6Ue0A/viewform

Thank you to everyone who has completed already - The map is filling up!
https://datastudio.google.com/u/0/reporting/7c867b81-1e47-4035-b442-c435ada05326/page/nKV0F?s=lHJ2eQhvWgU

Please note: All entries are anonymous, only location will be shown.

Help us light up the globe and show the true footprint of the GLUT1 community! By filling out this quick form, your general location will be added to our live interactive global map for Awareness Day. Privacy is our priority: We will only map your city and country. Please do not include your street....

21/06/2026

International GLUT1 Awareness Day is coming soon! Ahead of 10th July we want to know where in the world is GLUT1DS?

Help us light up the globe and showcase the true global footprint of the GLUT1 community. Together, we can show that no matter where we live, we are connected, visible, and stronger as one.

Fill out the Form to show where you are.

https://docs.google.com/forms/d/e/1FAIpQLSfpR4xYBmqoS7D2xbOEMzU0lZ5tKHppzgCaL8eZb1xOU6Ue0A/viewform

Please note: All entries are anonymous, only location will be shown.

21/06/2026

Happy Father’s Day to all the fathers, dads, stepdads, grandad’s and carers who show us their love every day. Today, we celebrate you and the difference you make every day to those living with Glut1 Deficiency Sydrome. Thank you. Enjoy your Day!

02/06/2026

We are feeling inspired after attending yesterday’s Aspire Biosciences CNS Networking Event alongside so many dedicated rare disease organisations.

It was encouraging to see the rare disease community out in force and to hear about growing pharmaceutical interest in rare conditions, including exciting and innovative research approaches that could help drive future treatment development and improve outcomes for patients and families.

Events like these provide valuable opportunities to build connections, share experiences, and ensure that the voices of rare disease communities remain at the heart of research and innovation.

We are particularly encouraged by the interest shown in GLUT1 Deficiency and look forward to continuing conversations with companies and researchers who are committed to advancing understanding, treatment options, and opportunities for collaboration within our community.

Thank you to Aspire Biosciences for bringing together such a diverse and passionate group of stakeholders. The future is built through partnership, and we are excited about the possibilities ahead.

31/05/2026

🌟 Looking Forward to an Exciting Day of Collaboration and Opportunity! 🌟

GLUT1 Deficiency UK is delighted to be attending the Rare Neuro/CNS Partnering Cohort tomorrow, held in conjunction with Aspire Biosciences at the Royal Institute of Medicine, London.

We are excited to connect with researchers, clinicians, industry leaders, patient organisations, and advocates who are all working to advance the future of rare neurological conditions.

Events like this provide a fantastic opportunity to build new relationships, strengthen existing networks, share the experiences of the GLUT1 community, and explore potential collaborations that could help drive awareness, research, and support for families affected by GLUT1 Deficiency Syndrome.

We look forward to engaging conversations, learning from experts across the sector, and creating opportunities that can help make a meaningful difference for those living with rare neurological conditions.

If you’re attending, we’d love to connect and discuss how we can work together to create positive change for the rare disease community.

Wishing everyone attending a productive and inspiring event—we’re looking forward to being part of the conversation.