Connecting the Community
The Kleefstra Worldwide Map demonstrates the connectedness of our community and enables opportunities for engagement with each other and the research community.Our ability to not only recognize our current population of individuals with Kleefstra syndrome, but to also showcase the growth of our community over time, makes Kleefstra syndrome a more attractive rare disease to build programs around as we march towards a treatment!
I Love Someone Rare
We’re kind of a big deal. Everyone in the KS community loves someone rare, but odds are, everyone else in the world does, too. 1 in 25,000 are expected to have Kleefstra syndrome. Every day, 10 people around the world will be born with Kleefstra syndrome. We invite you to join in this effort supported by our international network of families and organizations!
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Kleefstra Syndrome Worldwide Map
388
Male
459
Female
13
No gender
860
Total
We Are Growing - Kleefstra Count
About IDefine.org
IDefine is a nonprofit organization dedicated to discovering life-changing treatments and cures for those with intellectual disabilities stemming from genetic disorders.
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.
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Building a brighter future.
Founded in 2020 by a group of parents seeking better answers for their children and families living with a KS diagnosis, IDefine 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.
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