🧬 Did you know… Kleefstra Syndrome is caused by a change — either a deletion or a mutation — in the EHMT1 gene, found on chromosome 9? That’s why we’re sharing 9 facts about Kleefstra Syndrome throughout November 💙 💬 How many of our 9 facts do you think you already know? Stay tuned to find out! 👀 Follow along to learn more, raise awareness, and help shine a light on the incredible people and families in our KS community. ✨ #KleefstraSyndromeUK #RareDisease #DidYouKnow #Chromosome9 #Kleefstra
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🧬 Did you know… Kleefstra Syndrome is caused by a change — either a deletion or a mutation — in the EHMT1 gene, found on chromosome 9? That’s why we’re sharing 9 facts about Kleefstra Syndrome throughout November 💙 💬 How many of our 9 facts do you think you already know? Stay tuned to find out! 👀 Follow along to learn more, raise awareness, and help shine a light on the incredible people and families in our KS community. ✨ #KleefstraSyndromeUK #RareDisease #DidYouKnow #Chromosome9 #Kleefstra
125 views5 months ago
FacebookKleefstra syndrome Community
Cecilia's Story: A Kleefstra Syndrome Documentary
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Cecilia's Story: A Kleefstra Syndrome Documentary
26.3K viewsSep 17, 2022
YouTubeIDefine
🎆 Bonfire Night can be magical — but not for everyone. For many people with Kleefstra Syndrome, fireworks, bright lights and sudden noises can be overwhelming. 💥 💡 Here are a few sensory-friendly tips to help keep the evening calm, safe and happy for all 💙 1️⃣ Watch fireworks from indoors with curtains closed but lights dimmed 2️⃣ Use noise-cancelling headphones or play gentle background music 3️⃣ Prepare your child by showing videos of fireworks in advance 4️⃣ Create a quiet “safe space” wi
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🎆 Bonfire Night can be magical — but not for everyone. For many people with Kleefstra Syndrome, fireworks, bright lights and sudden noises can be overwhelming. 💥 💡 Here are a few sensory-friendly tips to help keep the evening calm, safe and happy for all 💙 1️⃣ Watch fireworks from indoors with curtains closed but lights dimmed 2️⃣ Use noise-cancelling headphones or play gentle background music 3️⃣ Prepare your child by showing videos of fireworks in advance 4️⃣ Create a quiet “safe space” wi
90 views6 months ago
FacebookKleefstra syndrome Community
Kleefstra syndrome Community on Reels
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Kleefstra syndrome Community on Reels
420 viewsSep 17, 2024
FacebookKleefstra syndrome Community
Did you know number 7! Kleefstra Syndrome is part of a small group of conditions that affect how the body “uses instructions” in our DNA. Instead of the scientific explanation, think of it like this: 📚 Our genes are a giant instruction book. ✨ For people with KS, one of those chapters works a little differently — which can affect learning, health, and development in unique ways. But just like every book has its own story, every KS journey is wonderfully individual. 💙 💬 How would you describe
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Did you know number 7! Kleefstra Syndrome is part of a small group of conditions that affect how the body “uses instructions” in our DNA. Instead of the scientific explanation, think of it like this: 📚 Our genes are a giant instruction book. ✨ For people with KS, one of those chapters works a little differently — which can affect learning, health, and development in unique ways. But just like every book has its own story, every KS journey is wonderfully individual. 💙 💬 How would you describe
133 views5 months ago
FacebookKleefstra syndrome Community
Conoce mas de este Sindrome de Kleefstra, en Mexico solo hay conocidos , diagnisticados 5 personitas, sufren muchos sintomas muy especificos y necesitan pronto diagnostico para mejorar su calidad de vida #caminandoconcarlitos. #sindromedekleefstra Josafath Benavides Mely Ylizaliturri Manolo Jiménez Salinas | Caminando con Carlitos
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Conoce mas de este Sindrome de Kleefstra, en Mexico solo hay conocidos , diagnisticados 5 personitas, sufren muchos sintomas muy especificos y necesitan pronto diagnostico para mejorar su calidad de vida #caminandoconcarlitos. #sindromedekleefstra Josafath Benavides Mely Ylizaliturri Manolo Jiménez Salinas | Caminando con Carlitos
1.8K views6 months ago
FacebookCaminando con Carlitos
Gabby's Story: A Kleefstra Syndrome Documentary
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Gabby's Story: A Kleefstra Syndrome Documentary
56.3K viewsSep 17, 2022
YouTubeIDefine
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Kleefstra Syndrome Documentary
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Professor Tjitske Kleefstra –Overview: The Journey of Kleefstra Syndrome
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YouTubeIDefine
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💙 Have you written your will yet? October is Free Wills Month, so you've still time! Through our partnership with Wills for Genes and Nigel Davis Solicitors, you can write a simple will (or pair of mirror wills) for free. Instead of paying a solicitor’s fee, you’ll be invited to make a donation that helps us support families living with Kleefstra Syndrome — providing connection, understanding, and vital resources. 📝 Suggested donations: ✅ £120 for a single will ✅ £200 for mirror wills It’s a s
124 views6 months ago
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After undergoing countless tests and procedures, it was thanks to the work of MCRI that five-year-old Olivia was finally diagnosed with Kleefstra Syndrome, an extremely rare genetic condition that affects one in 23 million people! This diagnosis has meant that Olivia can have the best possible life with tailored care, education and support. Change a life like Olivia's this Christmas. Donate to MCRI today: http://bit.ly/2ja9QQs | Murdoch Children's Research Institute - MCRI
45K viewsDec 5, 2017
FacebookMurdoch Children's Research Institute - MCRI
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Biometric-Guided TMS for Kleefstra Syndrome and ASD - Erik Won, Wave Neuro @Synchrony2021
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YouTubeThe BRAIN Foundation
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“My disability doesn’t hold me back,” says Paul. “I thrive my challenges.” 💪 At 21, Paul learned that he has Kleefstra syndrome, and took part in a natural history study to better define this newly recognized disorder. #RareDiseaseDay #kleefstrasyndrome | Boston Children’s Hospital
1.5K viewsFeb 28, 2023
FacebookBoston Children’s Hospital
🫡🫡🫡🫡 #medicalmom #kleefstrasyndrome #trachbabies
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Understanding Kleefstra Syndrome and its Impact on Culture and Medicine
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Overview of Seizures and Epilepsy Features in Kleefstra Syndrome
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An introduction to the Kleefstra syndrome community
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Syndroom van Kleefstra en Kinderen met Ontwikkelingsachterstand
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🍎 Isabelle - Le syndrome et ses caractéristiques - ep1 - Syndrome de Kleefstra - France 2021
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Defining A Better Future for the Kleefstra Syndrome Community
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Embracing the Unexpected: Life as a Medical Mum and Carer
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