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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

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 Kara👩🏻‍🔬🧬 et. al, for the research your team completed on olfactory bulb anomalies in KBG syndrome. Thank you to Dr. Anastassia Voronova and @drkarenlowfor working with the KBG Foundation to help gather current patient data to share with the celebrated authors! #KBGresearch #KBGsyndrome

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

The @KBGfdn is pleased to have attended the #rockvillescienceday held by Rockville Science Center presenting “Rare Attractions: The Magic of Magnetism”. Raising rare disease awareness one attraction at a time! #kbgsyndrome #kbgfdn #everylinkmatters #rockvillescienceday

#KBGDay2024 shirts are now on sale. Order yours today! store.kbgfoundation.org #KBGfdn #KBGawareness #KBGSyndrome #everylinkmatters

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

Congratulations and thank you! This paper will provide so much hope for families with KBG syndrome! #kbgsyndrome #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…

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

“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

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

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

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

Let's TalKBG: learn about the KBG syndrome Natural History Study with #AcrossHealthcare CEO, Jason Colquitt and #KBGfdn Chairman of the Board, Glenn Maughan. Glenn Maughan #KBGRegistry #KBGNHS #KBGsyndrome #everylinkmatters #KBGfdn #AcrossHealthcare. youtu.be/t1jv7uV9qXo?si…

Hey はうはう 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

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…

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

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.