Rare Disease Day is a week away! Show your support by printing this support pledge, take a picture of you holding it and share it far and wide! What other ways will you show your support this year? #RDD2024 #RareDiseaseDay #KBGsyndrome #everylinkmatters #KBGfdn

The KBG Foundation is giddy to announce that we will again be representing KBG syndrome at the NIH on Rare Disease Day with a poster AND a table! Registration is still open: registration.socio.events/e/rddnih2024 See you there! #KBGFdn #RDD2024 #RareDiseaseDay #KBGsyndrome #everylinkmatters

KBG syndrome isn't just rare....it's ULTRArare. #KBGsyndrome #RareDiseaseDay #RDD2024 #everylinkmatters #KBGfdn

Since 2011, the diagnostic criteria for a diagnosis of KBG syndrome means testing for variants in ANKRD11. Learn more about ANKRD11 at medlineplus.gov/genetics/gene/… #KBGsyndrome #rarediseaseday #rdd2024 #KBGfdn #everylinkmatters

Diagnosis are occurring earlier and earlier in a patients life. While the average time to diagnosis is still around 7 long years, most KBG-affected individuals are diagnosed under the age of 21. #KBGsyndrome #RareDiseaseDay #RDD2024 #KBGfdn #everylinkmatters

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…