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.

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.

About IDefine

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

IDefine was founded in 2020 by a group of parents seeking better answers for their children and families living with a KS diagnosis.

Our Organizational Values

We are defining a new future.

We adhere to the wisdom of Nelson Mandela: “It always seems impossible until it is done.”

We enjoy the journey.

We build relationships with gratitude, laughter, and camaraderie. We embrace challenges.

We are all in.

We are 100% committed to getting the results we want.

We are relentlessly collaborative.

We are driven to find the answers. We encourage open conversation. We don’t know strangers.

We are unshakeable.

We remain “calm in the pocket” when things get tough. With laser focus, we make the uncomfortable comfortable.

We display raw authenticity.

What you see is what you get. We are real with no agendas other than to help others.

Our Blog

Ultragenyx presentation
IDefine attends Ultragenyx Rare Entrepreneur Bootcamp
Ultragenyx, a biopharmaceutical company involved in the development of novel products for treatment of rare genetic diseases, has been advising rare disease...

Our Events

International
Kleefstra Syndrome Family & Scientific Conference (Virtual)
March 24, 2022

Hosted by IDefine, Boston Children’s Hospital Translational Neuroscience Center, Radboud University Medical Center, and KleefstraSyndrome.org

North American Kleefstra Syndrome Family Conference (In Person) June 23-25, 2022 - Naperville, IL

This conference will focus on practical education and tips for families raising children and adults with KS.

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.