Newly Diagnosed?


with a parent


 the Rare-X Data
Collection effort


 the latest news



Kleefstra Clinic at the Rosamund Stone Zander Translational Neuroscience Center


IDefine Social Media:

Please make sure to follow IDefine on Facebook / Instagram / Twitter / LinkedIn and sign up for our newsletter to stay on top of all our news, announcements and community interest stories.

Kleefstra Syndrome Facebook Pages

We are a global community! There are support groups set up as private, closed groups on Facebook for various regions around the world. 

Global Genes

Global Genes is a global non-profit advocacy organization for individuals and families fighting rare and genetic diseases.

National Organization for Rare Diseases (NORD)

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD’s Resource Center provides patients and caregivers with free webinars, fact sheets, infographics and other helpful materials to guide you on your journey with a rare disease.

Have a resource to suggest?
Please email us at
Thank you!

Get Involved

Data Collection

Participating in a data collection program is one of the most important things that families with a child with Kleefstra Syndrome can do.

Having a robust database will allow IDefine and our Kleefstra community to generate more interest from clinicians, researchers and drug developers in order to help discover a treatment for Kleefstra Syndrome.

To Register your loved one, please go to:

IDefine has partnered with All Stripes to accelerate research opportunities via the collection of de-identified medical records.

For patient families, All Stripes easily collects and store medical records for ease of access while also providing visibility to doctors’ notes you may have never seen. Further, participating and contributing the medical records allows insight to how your rare disease journey compares to others with your condition, and what’s helping.

Click here to join AllStripes


We're just getting started. Join us!

As IDefine continues working towards our mission, we are seeking partners and volunteers who can help us raise funds and organize our efforts to build this much needed resource for the Kleefstra Syndrome community. If you would like to donate time, talent and resources to further our mission, we would love to hear from you.

Please reach out at
Our Current Needs:

– IT Coordinator
– Development Director
– Data Management Coordinator
– Communications Team Member
– Fundraising Team Member


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.