KBG Foundation

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

[KBG Foundation @KBGFdn]

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

[KBG Foundation @KBGFdn]

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 💛

[KBG Foundation @KBGFdn]

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

[KBG Foundation @KBGFdn]

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.
https://t.co/Gf3FapPAtU
#StoriesOfStrength #KBGFdn #CaregiverMonth #EveryLinkMatters #RareVoices #KBGsyndrome

[KBG Foundation @KBGFdn]

Caregivers hold families together through courage and compassion. This month, we honor you. 💙#CaregiverMonth #StoriesOfStrength #KBGsyndrome #KBGfdn

[Unique @Unique_charity]

New guide available: #ANKRD11 and #KBGSyndrome in adults🧬
👉 https://t.co/33jTfxzyd9

This guide is designed to help individuals with KBG syndrome, their families, and healthcare and other professionals involved in their care.

[KBG Foundation @KBGFdn]

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

[KBG Foundation @KBGFdn]

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

https://t.co/UEU9zgrXw5

[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

[KBG Foundation @KBGFdn]

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: https://t.co/D0VdzJmYXW

https://t.co/1Ay4qr2mM9 via @giphy

[KBG Foundation @KBGFdn]

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.
https://t.co/VBTQBFVpCb

[KBG Foundation @KBGFdn]

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.

https://t.co/xB8Tp7bqzg

#KBGresearch #KBGfdn #everylinkmatters #KBGsyndrome

[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 👇 ‼️ https://t.co/mUpQ1tRnsU

#KBGSyndromeAwarenessDay #KBGgrows #genetics @KBGFdn @KBGSyndrome

[KBG Foundation @KBGFdn]

Happy #KBGDAY2024!
Show us your day!
#KBGsyndrome #MeandKBG #Dayinthelife #KBGfdn #everylinkmatters

[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

[KBG Foundation @KBGFdn]

@RareDiseases Thank you for sharing! The more patients we find the more we can help!

[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

[KBG Foundation @KBGFdn]

It's not too late to order your limited edition #KBGDay2024 wristbands! Get yours today before they are gone!
#KBGsyndrome #everylinkmatters #KBGfdn

https://t.co/jh0JAnV89Z

[KBG Foundation @KBGFdn]

@GeneDx 40% of people with @KBGSyndrome also have a diagnosis of epilepsy. #ANKRD11

[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🙏