Raising Awareness for Koolen-de Vries Syndrome—One Story at a Time.
Join us in raising awareness and supporting families affected by this rare condition
💙 ABOUT OUR JOURNEY
Our daughter, Jayden, was diagnosed with Koolen-de Vries Syndrome, a rare genetic condition. This website is our way of sharing her story, raising awareness, and helping others.
🧬 WHAT IS KdVS?
Koolen-de Vries Syndrome is a rare genetic disorder that affects development, cognition, and physical health. It is caused by changes in the KANSL1 gene
🤝 HOW YOU CAN HELP
✔ Spread Awareness – Share our story and information.
✔ Connect – Join the community of families & supporters.
📚 RESOURCES & SUPPORT
📌 Medical Info
📌 Parent Support Groups
📌 Therapy & Educational Tools
📌 Research Studies
📝 LATEST BLOG UPDATES
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Social Media
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Contact Us
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