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.
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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.
Let’s see how far our KBG Awareness reaches! The Global #Showofhands starts now! Comment your location on this post and then share it with the same instructions. Lets join hands around the world! Let’s see how much of our world is #KBGaware! #KBGDay2025 #KBGfdn #KBGAwareness
For those who couldn't tune in, the live tutorial for the Global #SHOWOFHANDS #KBGAWARE T-shirts is now available to watch. Let's see those shirts and those hands! Are you #KBGAWARE? #kbgaware #kbgday2025 facebook.com/share/v/16aT9Q…
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
Hey @followers let's do this! If every follower of the KBG Foundation donates just $5, we will exceed our goal of $11,000. Share and let's help find a treatment for our KBG families! Donate at: tinyurl.com/Giving4KBG giphy.com/stickers/Givin… via @giphy
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Sticker Share Sticker by GivingTuesday - Find & Share on GIPHY
Let's TalKBG: learn about the KBG syndrome Natural History Study with #AcrossHealthcare CEO, @jasoncolquitt and #KBGfdn Chairman of the Board, Glenn Maughan. @daylightnerd #KBGRegistry #KBGNHS #KBGsyndrome #everylinkmatters #KBGfdn #AcrossHealthcare. youtu.be/t1jv7uV9qXo?si…
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YouTube
Let's TalKBG: KBG syndrome Patient Registry and Natural History Study
Dr. Anastassia Voronova and her team have shed new light on the heart-brain connection in KBG syndrome. Voronova is one of five researchers who received Seed Funding Grants from the KBG Foundation. ualberta.ca/medicine/news/… #KBGresearch #KBGfdn #everylinkmatters #KBGsyndrome
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
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
“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
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
It's not too late to order your limited edition #KBGDay2024 wristbands! Get yours today before they are gone! #KBGsyndrome #everylinkmatters #KBGfdn kbgfoundation.org/shop/ols/produ…
Congratulations and thank you! This paper will provide so much hope for families with KBG syndrome! #kbgsyndrome #kbgresearch #everylinkmatters
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🙏
April 29th: "Undiagnosed Day was established in 2022 by the Wilhelm Foundation, to raise awareness for people living with a disease that has not yet been identified and assigned a name by medical science." #KBGsyndrome #KBGfdn #everylinkmatters
#KBGDay2024 shirts are now on sale. Order yours today! store.kbgfoundation.org #KBGfdn #KBGawareness #KBGSyndrome #everylinkmatters
The @KBGfdn is pleased to have attended the #rockvillescienceday held by @rockvillesci presenting “Rare Attractions: The Magic of Magnetism”. Raising rare disease awareness one attraction at a time! #kbgsyndrome #kbgfdn #everylinkmatters #rockvillescienceday
Ready to raise awareness? Check out our guide to request an official declaration or proclamation recognizing KBG Syndrome Awareness Day. . June 11 is coming soon! Let’s do this! Tinyurl.com/kbgproclaim #kbgday2024 #kbgsyndrome #kbgfdn #everylinkmatters
Thank you @karaboo_98 et. al, for the research your team completed on olfactory bulb anomalies in KBG syndrome. Thank you to @AMVoronova and @drkarenlowfor working with the @KBGFdn to help gather current patient data to share with the celebrated authors! #KBGresearch #KBGsyndrome
Very excited to share our paper published today in @BMCMedicine on a discovery of a novel olfactory bulb phenotype in a mouse model and human patients with a rare neurodevelopmental disorder KBG syndrome rdcu.be/dEJ2y @NMHI_UofA @UAlberta_FoMD @WCHRIUofA 1/9
March 26th is International Epilepsy Awareness Day. Approximately 40% of people with KBG syndrome experience recurring seizures. We invite you to wear purple on the 26th to show your support for families living with epilepsy. #KBGsyndrome #KBGFdn #everylinkmatters #purpleday2024
Thank You to all that supported Rare Disease Day in honor of someone they know living with a rare condition. Never before have so many people raised their voices and their lights to say they see us! We see you too! #ThankYou #RareDiseaseDay #KBGsyndrome #everylinkmatters #KBGfdn
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