Glut1 Deficiency UK

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.

18/05/2026

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12/05/2026

It has been a very busy couple of days here at Glut1 Deficiency UK.

Our parent volunteer Zoe Fielden attended Keto College today - An annual event in the Matthew's Friends Ketogenic Therapies charity calender.

‘It’s been a great first day at Ketocollege talking with dieticians and neurologists from all over the UK and around the world-Romania, Lithuania and New Zealand to name just a few!’

‘The easy read guides have been especially popular, with one dietitian sharing she gives it to all newly diagnosed families!!’

❤️

12/05/2026

Day 2 brought another great wave of engagement for us as a small charity exhibiting at RCPCH.

Footfall ebbed and flowed, but the quality of conversations was consistently strong.

Clinicians stopped by to learn more about rare and metabolic conditions, with many looking for clearer pathways to support families.

Interest in rare diseases continued to grow, sparking meaningful discussions about awareness and early diagnosis.

Networking across charities and hospital teams opened doors for future collaboration.

Resources were flying — printed materials and QR scans were noticeably higher than yesterday.

11/05/2026

Day one at the RCPCH Conference has been an incredible experience for our small charity. We’ve had the opportunity to raise awareness, share our mission, and connect with so many inspiring people from across the paediatric community.

It’s been especially meaningful to speak with global delegates, healthcare professionals, researchers, and students who are passionate about improving outcomes for children and families. The conversations, interest, and support we’ve received today have been both encouraging and motivating.

As a small charity, opportunities like this are invaluable — helping us build new relationships, expand awareness internationally, and ensure that the voices of the families we represent continue to be heard. Looking forward to another exciting day tomorrow!

11/05/2026

What fabulous day so far engaging with our fellow exhibitors !! ❤️

Societi, the U.K. Foundation for Kawasaki Disease

Barrie Wells Trust

10/05/2026

Well that’s us all set up and ready to go!! …..

Come on Royal College of Paediatric & Child Health Glut1 Deficiency UK is ready for you!!

30/04/2026

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12/04/2026

SAVE THE DATE Reminder!
We are working to support our friends at the Italian Glut1 Association and help them with the 6th European Glut1 Meeting in Milan next year. If you are considering attending can you please email [email protected] with number of children attending.

📣 Con grandissimo piacere, diffondiamo questo SAVE THE DATE per il 6° CONVEGNO EUROPEO SUL GLUT1, che si terrà a Milano 🇮🇹 dal 9 all'11 maggio 2027📣

Sarà un importante momento di approfondimento scientifico con i massimi esperti al mondo sulla nostra patologia e di condivisione della nostra comunità.

Maggiori informazioni saranno condivise nei prossimi mesi...ma intanto: SAVE THE DATE📝