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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 is a global non-profit advocacy organization for individuals and families fighting rare and genetic diseases.
National Organization for Rare Diseases (NORD)
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: https://kleefstra.rare-x.org/
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!
Please reach out at Unlock@IDefine.org
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.