I define my future.
I will change the world.

IDefine is committed to identifying life-changing treatments & cures for those with Kleefstra Syndrome and other Intellectual Disabilities, building community and resources for families.

To learn more about IDefine’s current efforts, please read this message from our founders.

IDefine is a nonprofit organization dedicated to discovering life-changing treatments and cures for those with intellectual disabilities stemming from genetic disorders.

Click below to see if your employer will match your donation.

I define my future.

I will change the world.

IDefine is committed to identifying life-changing treatments & cures for those with Kleefstra Syndrome and other Intellectual Disabilities, building community and resources for families.

To learn more about IDefine’s current efforts, please read this message from our founders.

IDefine is a nonprofit organization dedicated to discovering life-changing treatments and cures for those with intellectual disabilities stemming from genetic disorders.

Click below to see if your employer will match your donation.

IDefine is a nonprofit organization that exists to provide a central community for families affected by Kleefstra Syndrome (KS)

Recent Newsletters

Stay in tune with the latest community news!

Our Blog

CombinedLogo-color
Opportunity to establish KS biorepository
With COMBINEDBrain we have the chance to collect Kleefstra Syndrome bio samples (e.g. blood), to be used by researchers in future projects. This is an...

Our Events

IDefine Europe’s hybrid Kleefstra Syndrome Scientific Conference 2023: “Moving towards the uptake and use of Artificial Intelligence (AI) in research and clinical work” is coming up!   The event brings together Kleefstra Syndrome PAOs, clinicians and researchers from different domains having a common interest: share new research findings related to Kleefstra Syndrome that will lead to improved care and towards  the discovery of a life-changing treatment and cure for Kleefstra Syndrome. A special focus is given to artificial intelligence (AI) that can play a crucial role, especially in shortening the time needed for new research insights.

Kleefstra Survey

TAKE PART NOW — Radboud University Medical Center Kleefstra Survey

Radboudumc is constantly collecting data from people with Kleefstra syndrome. This survey is for parents/caregivers of a family member with Kleefstra Syndrome.

Our Online Store

Support our cause

Our “ I Love Someone Rare” Campaign products are available for purchase now. All proceeds….lorem ipsum…

I Love Someone
Rare T-shirt

I Love Someone Rare
Water Bottle

I Love Someone
Rare Mug

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.