Calling all caregivers of children with #KBG syndrome! We are recruiting caregivers of individuals with rare disorders (aged 2-35) for a clinical trial focused on YOU the caregiver! Go to our page or email us for more information! #kbgs #kbgsyndrome #raregenes #raredisorder

Launched last year, the KBG syndrome Natural History Study and Patient Registry is an IRB-governed project aimed at aiding research and providing patients with a resource to track their own healthcare needs. If you have #KBGsyndrome join today! kbgfoundation.org/kbg-syndrome-r…

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…

🌟A groundbreaking study has uncovered why 40% of children with KBG syndrome experience heart defects. Read more: bit.ly/3W77OU2 Credit: University of Alberta #MedicalResearch #HeartHealth #Pediatrics #Genetics #KBGSyndrome #meded #eMednews

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

Exciting work and thrilled that the KBG Foundation played a part in funding this valuable research! Blessed that so far our son does not show any heart defects or issues. #KBGsyndrome has ruled our lives but not our living! Thank you Dr. Anastassia Voronova et al!

From NORD : The KBG Foundation invites patients to join the #KBGSyndrome natural history study. This study will help researchers learn more about #KBG and find a potential treatment! kbgfoundation.org/kbg-syndrome-r…

Today, June 11th, is KBG Awareness Day! Join NORD and KBG Foundation in spreading the word about #KBGSyndrome and those living with it. #KBGDay2024 #LifeWithKBG!

June 11th is KBG Syndrome Awareness Day! Meet Glenn, painted by Robert Hurst. Sound on! #rarediseases #kbgsyndrome

Today, June 11th, is KBG Awareness Day! Join NORD and KBG Foundation in spreading the word about #KBGSyndrome and those living with it. Wear your #KBGS apparel, share your story, and use the hashtags #KBGDay2024 and #LifeWithKBG! Learn about this disorder: rarediseases.org/rare-diseases/…

🌟 Spotlight on KBG Syndrome 🌟 KBG Syndrome, a rare genetic condition, results from ANKRD11 gene mutations and presents with unique facial features, skeletal abnormalities, and developmental challenges. #KBGsyndrome #GeneticMutations #RareDiseaseAwareness

🚨 KBG Syndrome Awareness 🚨 KBG Syndrome, caused by ANKRD11 gene mutations, leads to unique facial features, developmental delays, and behavioral issues. Early diagnosis and support make a difference. Spread the word! 💙 #KBGsyndrome #RareDiseases

KBG syndrome awareness day #KBGsyndrome #ANKRD11 #KBGsyndromeAwarenessDay KBG Syndrome KBG Foundation

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

The KBG Foundation invites patients to join the #KBGSyndrome natural history study. This study will help researchers learn more about #KBG and find a potential treatment! kbgfoundation.org/kbg-syndrome-r…

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…

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

We're back for another Charity Partner spotlight. This time it's the KBG Foundation (KBG Foundation). The KBG Foundation is a patient-led organisation devoted to supporting families affected by #KBGSyndrome. To find out more about the foundation, visit kbgfoundation.org

Collaboration is key. Together with the KBG Foundation KBG Syndrome Foundation, we are running a study about adults with #KBGsyndrome. The study is for people with KBG syndrome that are 16 years and older. The study closes at the end of June ‼️ Check out more👇 chdredcaplive.bris.ac.uk/redcap/surveys…