2026 Year-End Campaign
Every Child Deserves More Than a Diagnosis.
Every child deserves the chance to flourish. Your gift helps IDefine move Kleefstra syndrome research from research ready to treatment focused — turning questions into answers, answers into treatments, and hope into possibility.
Help us raise $150,000 by January 5 to accelerate the research families are waiting for.
Driving progress toward treatments and a cure for Kleefstra syndrome
Latest Research & Community Updates
Hello fellow members of our KS family! As you probably know, at its core, Kleefstra syndrome (KS) is caused by damage to one copy of the gene EHMT1. Since...
IDefine is a nonprofit organization dedicated to supporting individuals and families affected by Kleefstra syndrome while accelerating research toward new treatments and eventually a cure.
Through IDefine, families can connect, share experiences and access trusted information so they do not need to navigate KS alone.
Recent Newsletters
Stay in tune with the latest community news!
Our Online Store
Support our cause
Our “I Love Someone Rare” campaign products are available for purchase now!
We would love to hear from you.
Whether you are a family member, researcher, clinician, or potential partner, please reach out with any questions. A member of our team will get back to you as soon as possible.