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It's #TubeFeedingAwarenessWeek "Our role is to ensure that patients & their families are supported throughout their care. We aim to positively educate patients & families about their feeding tubes & how to integrate this into normal family life. Remember, we all need to eat"

Glut1 DS is rare. With around 150 cases in the UK & Ireland. The number worldwide is thought to be in the hundreds. Recent studies have estimated true prevalence to be at least 1:21,000, so the vast majority remain undiagnosed. Genetic Alliance UK #raredisease #neurotwitter

Our #RareDiseaseDay 2024 report has launched! We know surprisingly little about the 3.5 million people in the UK who are estimated to be affected by rare conditions. Our report explores the statistics behind the rare community. Learn more and read now: ow.ly/Zshm50QJaBc

Today is #RareDiseaseDay, a day for coming together to raise awareness for all rare diseases, including epilepsy. While everyone’s rare disease journey is unique, there are common struggles, and we can work together to drive research and understanding of these rare conditions.🧵

This #PurpleDay we are proud to launch a survey to assess the current capacity in #epilepsy research. To coincide with the launch, today’s inaugural Epilepsy Research Institute Insights webinar will explore how we can build a thriving research ecosystem: epilepsy-institute.org.uk/eri/news/purpl…

onlinelibrary.wiley.com/doi/full/10.10…

Day 3 at #RCPCH24 Rare diseases can be hard to diagnose. Come along and we can help you understand more about #Glut1deficiency Early diagnosis is vital for best treatment outcomes #togetherforglut1

Join the online book launch of 'The Mental Health and Wellbeing of Children and Young People with Learning Difficulties.' on 23rd April at 7pm. 📖 Book available at 20% discount. Sign up Here: lnkd.in/eJHuVNdH #SEND #asn #pmld #edpsych #teachers #mentalhealth

Heyyyy! It's #NationalEpilepsyWeek 🧠⚡️!! We feel the love being associated with all of these great epilepsy organisations below 👇! We recommend that you follow them if you'd like to keep up to date with the latest on the work being done to help people with an #epilepsy in the

What a pleasure and honour to champion breastfeeding within the ketogenic diet for drug resistant epilepsy and share my experience RMCHosp AHP's at MFT KetoCollege

Happy Father’s Day to our wonderful Dad’s, Step Dad’s, Grandad’s & Grandpa’s and all the men who help support us 💙 #togetherforglut1 #fathersday #glut1awareness

Fantastic day today at the Glut1 Family Day. Thank you to Debra at Nutricia HCP UK, Janette & Christina at Royal Hospital for Children, Glasgow - and all at Glasgow Science Centre. Making connections with families in our community plays a vital role in our mission. #togetherforglut1

Today we celebrate International Glut1 Awareness Day with our community, raising awareness of Glut1 and learning more together. The hopes and dreams of our community drives us to continue our mission youtu.be/5ucPwVv9SGE?fe… #togetherforglut1

Please join our next Research Roundtable to hear Dr. Juan Pascual and Prof. Dr. Jörg Klepper share some highlights, take-aways, and snapshots from our recent Glut1 Deficiency Summit. Learn more and register at our website: g1dfoundation.org/events/researc…

Sending congratulations and best wishes to Dr. Jong Rho on his new appointment at Yale. He's a treasured member of our Medical and Scientific Advisory Board and an exceptional advocate for ketogenic dietary therapies. We're thankful for him! medicine.yale.edu/news-article/l…

Proud to attend today’s Parliamentary Neuro Reception to raise awareness of GLUT1 Deficiency Syndrome. Thank you Anna, Mum to Harry and Glut1 Deficiency UK representative 💙💛 #TogetherForGlut1 #glut1ds #BackThe1in6 #raredisease

Looking forward to the RCPCH today RCPCH_and_Us pop along to stand A24 and say hello! #togetherforglut1

Day 2 of the RCPCH was a huge success! Supporting our mission of raising awareness at the earliest opportunity, educating and raising awareness of the signs and symptoms of GLUT1 Deficiency. Thank you for popping by ! #TogetherForGlut1