Kabuki Syndrome Foundation
@kabukisyndrome.bsky.social
We drive research to treatments for this rare disease through collaboration, education, and fundraising. www.kabukisyndromefoundation.org
𝗢𝗻 𝘁𝗵𝗶𝘀 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗗𝗮𝘆, we are empowering our global community to share their #𝗿𝗮𝗿𝗲𝗔𝗡𝗗 stories, showcasing the resilience of those living with Kabuki syndrome. People with Kabuki syndrome are rare AND SO MUCH MORE. Learn more, use our toolkit & join our collaborative network: bit.ly/KSFToolkit
February 28, 2025 at 4:33 PM
𝗢𝗻 𝘁𝗵𝗶𝘀 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗗𝗮𝘆, we are empowering our global community to share their #𝗿𝗮𝗿𝗲𝗔𝗡𝗗 stories, showcasing the resilience of those living with Kabuki syndrome. People with Kabuki syndrome are rare AND SO MUCH MORE. Learn more, use our toolkit & join our collaborative network: bit.ly/KSFToolkit
Our partners at @bostonchildrens.bsky.social invite you to a special virtual Grand Rounds with expert geneticist Heidi Rehm next week. See you there! Registration is free: lnkd.in/gsfbiVm6
February 19, 2025 at 4:22 PM
Our partners at @bostonchildrens.bsky.social invite you to a special virtual Grand Rounds with expert geneticist Heidi Rehm next week. See you there! Registration is free: lnkd.in/gsfbiVm6
✨ Our 2024 Impact Report highlights the identification of 9 potential Kabuki syndrome treatments, $700,000 in new KSF grants, and more: bit.ly/KSF2024Impact ✨We look forward to continuing this collaborative momentum towards treatments in 2025!
January 24, 2025 at 10:22 PM
✨ Our 2024 Impact Report highlights the identification of 9 potential Kabuki syndrome treatments, $700,000 in new KSF grants, and more: bit.ly/KSF2024Impact ✨We look forward to continuing this collaborative momentum towards treatments in 2025!
Our “dancing K" represents the joy and hope of our community. And our hope is in action! We are committed to funding treatments that unlock healthier futures for people with Kabuki syndrome and have supported 7 potential treatments so far! Join us: bit.ly/KSFNewsRegis...
January 17, 2025 at 6:32 PM
Our “dancing K" represents the joy and hope of our community. And our hope is in action! We are committed to funding treatments that unlock healthier futures for people with Kabuki syndrome and have supported 7 potential treatments so far! Join us: bit.ly/KSFNewsRegis...
67 new individuals joined our global census and contact registry last quarter! Kabuki Count keeps families informed of new research opportunities and clinical trials. 📈 Explore more insights like age and sex here: bit.ly/KabukiCountInsights
January 13, 2025 at 5:11 PM
67 new individuals joined our global census and contact registry last quarter! Kabuki Count keeps families informed of new research opportunities and clinical trials. 📈 Explore more insights like age and sex here: bit.ly/KabukiCountInsights
🎉 Now on YouTube! Watch this year's conference recordings to see the NINE TREATMENTS in development, live panel discussions, and discover how our community is preparing for clinical trials. Start with the playlist here! ➡️ bit.ly/2024ConferenceYouTube
December 10, 2024 at 6:34 PM
🎉 Now on YouTube! Watch this year's conference recordings to see the NINE TREATMENTS in development, live panel discussions, and discover how our community is preparing for clinical trials. Start with the playlist here! ➡️ bit.ly/2024ConferenceYouTube
Hello! We’re kicking this off by inviting you to our BIGGEST event of the year! Our annual research conference is tomorrow and highlights the latest progress and opportunities in Kabuki syndrome research. ➡️ This rare disease has no treatments! We’re changing that. Join us: bit.ly/2024KSFConf_...
December 4, 2024 at 10:28 PM
Hello! We’re kicking this off by inviting you to our BIGGEST event of the year! Our annual research conference is tomorrow and highlights the latest progress and opportunities in Kabuki syndrome research. ➡️ This rare disease has no treatments! We’re changing that. Join us: bit.ly/2024KSFConf_...