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IDefine is committed to identifying life-changing treatments & cures for those with Kleefstra Syndrome and other Intellectual Disabilities, building community and resources for families.
Founded in 2020 by a group of parents seeking better answers for their children and families living with a KS diagnosis, IDefine is a nonprofit organization that exists to provide a central community for families affected by Kleefstra Syndrome (KS). We are here to share information, collaborate for advocacy, and pool resources to support life-changing treatment and intervention. We are committed to unlocking the potential of individuals living with Kleefstra syndrome.
IDefine’s global team has worked to build connections between our KS community and health professionals, inviting collaboration and fueling research for innovative treatments for those affected by this rare genetic condition. We are intent on accelerating in research through investment and organization while simultaneously building medical expertise to further develop treatment options and care. We are working steadfastly towards a cure for Kleefstra Syndrome as well as other Intellectual Disabilities.