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. kbgfoundation.com USA Joined June 2015-
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On Rare Disease Day we are pleased to unite the Global KBG Syndrome Community! We are honored to announce the KBGS Guideline Consensus Meeting for KBG syndrome. 📅 October 2–4, 2026 📍 Europe #KBGFoundation #KBGSyndrome #RareDiseaseCommunity #GlobalKBG #ERNITHACA
Children with #KBGSyndrome aren’t failing to thrive — they’re growing on a different curve. New research created the first KBG-specific growth charts so families are no longer judged by tools never meant for them. #DifferentNotDeficient #RareDisease #ANKRD11 #EveryLinkMatters 💛
We’re excited that the Maughan family will again be attending the Rare Disease Day at the NIH on Saturday, February 28, 2026, on behalf of the KBG Foundation. 💙 #RareDiseaseDay2026 #RDDNIH #KBGFdn #KBGsyndrome #RareDiseaseCommunity #everylinkmatters
Caregiving isn’t just about love — it’s about strength, patience and showing up every single day. 💜Meet Marion who reminds us why every act of care is an act of courage. medium.com/rare-voices-th… #StoriesOfStrength #KBGFdn #CaregiverMonth #EveryLinkMatters #RareVoices #KBGsyndrome
Caregivers hold families together through courage and compassion. This month, we honor you. 💙#CaregiverMonth #StoriesOfStrength #KBGsyndrome #KBGfdn
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
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…
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
Happy #KBGDAY2024! Show us your day! #KBGsyndrome #MeandKBG #Dayinthelife #KBGfdn #everylinkmatters
“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
@RareDiseases Thank you for sharing! The more patients we find the more we can help!
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…
@GeneDx 40% of people with @KBGSyndrome also have a diagnosis of epilepsy. #ANKRD11
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🙏
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