The KBG Foundation is a 501(c)(3) nonprofit, dedicated to providing support, assisting in research and advocating to raise awareness about KBG Syndrome.
Joined June 2015
- Tweets 382
- Following 507
- Followers 595
- Likes 784
179 Photos and videos
Mar 1
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
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Jan 31
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 💛
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Jan 21
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
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12 Nov 2025
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-the-k…
#StoriesOfStrength #KBGFdn #CaregiverMonth #EveryLinkMatters #RareVoices #KBGsyndrome
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12 Nov 2025
Caregivers hold families together through courage and compassion. This month, we honor you. 💙#CaregiverMonth #StoriesOfStrength #KBGsyndrome #KBGfdn
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KBG Foundation retweeted
9 Jul 2025
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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11 Jun 2025
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
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4 Jun 2025
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/16aT9QR…
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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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3 Dec 2024
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/GivingTue… via @giphy
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9 Jul 2024
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=cMYc…
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3 Jul 2024
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/20…
#KBGresearch #KBGfdn #everylinkmatters #KBGsyndrome
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11 Jun 2024
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
11 Jun 2024
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/red…
#KBGSyndromeAwarenessDay #KBGgrows #genetics @KBGFdn @KBGSyndrome
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11 Jun 2024
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10 Jun 2024
“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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9 Jun 2024
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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30 May 2024
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/p…
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14 May 2024
Congratulations and thank you! This paper will provide so much hope for families with KBG syndrome!
#kbgsyndrome #kbgresearch #everylinkmatters
14 May 2024
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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29 Apr 2024
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
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22 Apr 2024
#KBGDay2024 shirts are now on sale. Order yours today!
store.kbgfoundation.org/
#KBGfdn #KBGawareness #KBGSyndrome #everylinkmatters
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