Natural History Study

Now enrolling: The objective is to gather as much data as possible about children and adults with CDKL5, Rett syndrome, and other Rett-related disorders...

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June is CDKL5 Awareness Month

June 17th is International CDKL5 Day! Spread awareness all month long!

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Thank you!

Thank you to all our fundraising families! We couldn't do this without you.

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Our mission is to lead the way in finding a cure and treatments for CDKL5 disorder. Through funding global research efforts, and increasing awareness of CDKL5 disorder, we hope to enhance the quality of life for those affected by CDKL5 disorder. We do this by providing a variety of information, programs, and services.

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2-3 Children

diagnosed per week

Natural History Study

New sites enrolling now

$2.5 Million

raised for CDKL5 research

June is CDKL5 Awareness Month

June is CDKL5 Awareness Month and June 17th is CDKL5 Worldwide Awareness Day

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Thank You to the Giving Doll

The IFCR would like to thank The Giving Doll of Wadsworth, Ohio for generously donating their beautiful, handmade dolls to our new families.

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Natural History Study

Natural History Sites Now Enrolling!

Jan. 1, 2017 – Dec. 31, 2019

Knowledge that will be found  in this natural history study is essential for developing more efficient clinical trial designs. Check out the 15 enrolling sites and find one close to you!

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iPS Disease Modeling and Drug Development in CDKL5

If you have watched a health report on the news lately, you can hardly avoid the mention of stem cells and regenerative medicine. What do Zika virus, Parkinson’s Disease, spinal cord injuries, heart disease, and CDKL5 Disorder have in common?

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3rd International CDKL5 Family Conference & Science Symposium

3rd International Family Education and Awareness Conference at Eaglewood Resort and Spa in suburban Chicago, IL from June 24-26, 2016. 3rd International Family Education and Awareness Conference  CONFERENCE PROGRAM WITH FILE…

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Rare Disease Day Rally in Austin, TX

The IFCR was fortunate to have the opportunity to participate in the Rare Disease Day Rally at the State Capitol of Autsin, Texas.  The rally…

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3rd Annual Toasting Tanner

Come join us for our 3rd Annual Toasting Tanner as we dance, eat, drink and spend money celebrating the beautiful lives of the CDKL5 angels on earth. Event Details: August 26, 2017 6-10pm Woodstock Knoll Clubhouse 111 Johnston Farm Ln.…

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CDKL5 5th Annual Walk-For-A-Cure


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