Newly Diagnosed?

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with a parent

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 the Rare-X Data
Collection effort

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Accelerate

drug
development

Kleefstra Clinic at the Rosamund Stone Zander Translational Neuroscience Center

Resources

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 unlock@idefine.org
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.

To Register your loved one, please go to: https://kleefstra.rare-x.org/

IDefine has joined the Rare Patient Network, powered by Invitae’s Ciitizen platform, a next generation digital Natural History Study that organizes, summarizes and stores patient medical record information obtained from multiple hospitals and providers.
Important information that can accelerate research is often trapped in medical records. As a patient or parent/guardian, you can unlock those records and contribute them to research in a private and secure way. Ciitizen is a natural history study that uses medical records across multiple hospitals and providers where a participant has been seen, rather than patient/parent/caregiver reported data, to collect meaningful information on Kleefstra Syndrome has affected a person’s life.

Click here to join Ciitizen!

Volunteer.

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 Unlock@IDefine.org
Our Current Needs:

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

Fundraise

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.