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IDefine is a nonprofit organization dedicated to discovering life-changing treatments and cures for those diagnosed with Kleefstra syndrome. Our organizational pillars are built upon supporting the caregiver community, developing and strengthening coordinated clinical care, and propelling research towards a treatment for our loved ones diagnosed with Kleefstra syndrome.

What is Kleefstra Syndrome?

Kleefstra syndrome (KS) is a rare genetic disorder characterized by intellectual disability, childhood hypotonia, severe expressive speech delay and a distinctive facial appearance with a spectrum of additional clinical features. The syndrome, eponymously named for Dr. Tjitske Kleefstra, is caused by either a mutation or deletion of a gene called EHMT1 (Euchromatic Histone Methyltransferase 1). Kleefstra syndrome presents with a wide range of symptoms, and the severity of those symptoms vary from mild to severe.

IDefine, Inc. is a GA nonprofit corporation operating through a fiscal sponsorship with Players Philanthropy Fund, a Texas charitable trust recognized by IRS as a tax-exempt public charity under Section 501(c)(3) of the Internal Revenue Code (Federal Tax ID: 27-6601178, ppf.org/pp). Contributions to IDefine are tax-deductible to the fullest extent of the law.