
Building a
brighter future.
IDefine is committed to identifying life-changing treatments & cures for those with Kleefstra syndrome (KS), a neurodevelopmental disorder caused by a loss of function in one copy of the gene EHMT1.
To learn more about IDefine’s current efforts, please read this update of our Foundation Highlights!
Organizational Update
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IDefine is a nonprofit organization that exists to provide a central community for families affected by Kleefstra Syndrome (KS)
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2024 North American Family Conference Survey
We're planning NOW!
We are thrilled to begin planning for our 2024 North American Kleefstra Syndrome Family Conference! In 2022, families from across the United States and Canada gathered outside if Chicago for several days of community building, informative sessions, and support. We can’t wait for next year!

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Our “ I Love Someone Rare” Campaign products are available for purchase now. All proceeds….
We would love to hear from you.
If you have any questions feel free to contact us. We will be sure to get back to you as soon as possible.