Kleefstra Syndrome

To learn more about IDefine’s current efforts, please read this update of our Foundation Highlights!

Our Events

Kleefstra Syndrome Awareness Day
September 17th, 2023
Putting Kleefstra Syndrome on the Map!

With your help, we can make a difference in the lives of families every where across the world with Kleefstra Syndrome. Your generosity helps support the Kleefstra Clinic, enables our ability to build community via our 2024 family conference, and drives research initiatives forward that we hope will provide a brighter future for our loved ones!

Our Blog

CSO Corner Volume 6: ASOs Part 2

Hello fellow members of our KS family! For this newsletter, I’d like to return to antisense oligonucleotides, or “ASOs”. If you haven’t read my previous...

Recent Newsletters

Stay in tune with the latest community news!

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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Support our cause

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.

Building a
brighter future.

Our Events