KBG Foundation

382 posts

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KBG Foundation

KBG Foundation

@KBGFdn

The KBG Foundation is a 501(c)(3) nonprofit, dedicated to providing support, assisting in research and advocating to raise awareness about KBG Syndrome.

USA Inscrit le Haziran 2015
509 Abonnements596 Abonnés
KBG Foundation retweeté
Unique
Unique@Unique_charity·
New guide available: #ANKRD11 and #KBGSyndrome in adults🧬 👉 ow.ly/kqWp50WmQal This guide is designed to help individuals with KBG syndrome, their families, and healthcare and other professionals involved in their care.
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KBG Foundation retweeté
FDNA
FDNA@fdna·
A long journey led Annette to her son’s diagnosis: KBG syndrome. Now, through the @KBGFdn, she's helping other families get answers sooner. We're proud to partner with the Foundation to support earlier recognition of KBG. #RareDisease #Face2Gene #KBGFoundation #Genetics
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KBG Foundation
KBG Foundation@KBGFdn·
If you are 16 or older, have a diagnosis of, or are a caregiver for someone who has, KBG syndrome, it’s the last call to help identify the phenotype for adults with KBG. Perfect timing too: help others with KBG ON #KBGDAY2024
Allan Bayat, associated professor@AllanBayat

Today is #KBG syndrome awareness day; a common neurodevelopmental disorder with around 1000 affected people 🌎 ‼️ Last chance to participate in our study on adults with KBG syndrome 👇 ‼️ chdredcaplive.bris.ac.uk/redcap/surveys… #KBGSyndromeAwarenessDay #KBGgrows #genetics @KBGFdn @KBGSyndrome

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KBG Foundation
KBG Foundation@KBGFdn·
“Now what?” It’s the question many parents ask. Well, we are answering that! Members of the KBG Foundation Board, Scientific Advisory Board and other experts are developing international consensus guidelines for KBG syndrome. #KBGsyndrome #KBGresearch #KBGfdn #everylinkmatters
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KBG Foundation
KBG Foundation@KBGFdn·
The KBG Foundation, est 2015, has directed $76K in research over the past two years, thanks to generous donations. Your efforts help the KBG syndrome community, because every link matters when it comes to finding better treatments. #KBGDay2024 #KBGS #KBGresearch #everylinkmatters
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GeneDx
GeneDx@GeneDx·
Exome sequencing is more likely to find a #genetic #diagnosis for epilepsy patients. It’s recommended as a first-line test for individuals with unexplained #epilepsy by the National Society of Genetic Counselors and endorsed by the American Epilepsy Society.
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KBG Foundation
KBG Foundation@KBGFdn·
Congratulations and thank you! This paper will provide so much hope for families with KBG syndrome! #kbgsyndrome #kbgresearch #everylinkmatters
Allan Bayat, associated professor@AllanBayat

Our 1st of 2 papers on natural history of #KBG syndrome i accepted for publication in @GIMJournal‼️ This was based on physician reported health data from 36 KBG adults. Interestingly, 50% were living independently & around 25% were employed‼️ Will soon circulate a link🙏

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