KSN Community

JacksonKabuki Syndrome Network would like to welcome you to a network of parents. Whether you have recently received a diagnosis or it's been a number of years, we strive to support and learn from one another.

In the beginning the doctors appointments and therapies can seem overwhelming, but be assured that having Kabuki syndrome does not translate to a future of despair. Individuals with Kabuki live active and happy lives. By sharing our journey we feel less alone. Don’t be afraid to ask questions, share your story, vent your frustrations and even boast a little!

We invite you to connect with families near you through the Family Directory, join us in conversation via the Yahoo Group, organize and/or attend family gatherings, and become involved with fundraising for research. We are waiting to hear from you!

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