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The beginnings of CDKL5
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iPS Disease Modeling and Drug Development in CDKL5

Dr. Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has ... Learn More

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Advocacy Resources

You may want to consider keeping all the information you receive in a safe and convenient place, like a binder, for future reference.  Gathering and keeping this information in order will save you time, frustration, unnecessary testing and help you provide timely and accurate information to any professionals at the time of request.  In addition to the medical information you receive, you may want to consider adding some documents (below) to help others better understand your child’s and family’s needs:

Contact/Emergency Information Form 

Medical Specialst Contact Sheet

 Seizure Forms
Laboratory & diagnostic test results
Current medications

Current insurance Information

Past procedures Life planning tools
 We have also included some articles that may be helpful to you 
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