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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 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!
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.