4th International CDKL5 Family Conference

This free event will take place June 29-30, 2018 in Denver, Colorado.

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Rare Disease Day 2018

This year's global theme is Research. “With research, the possibilities are endless!”

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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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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

Karen Utley to Succeed Dr. Katheryn Elibri Frame as President of the International Foundation for CDKL5 Research

The International Foundation for CDKL5 Research announces new president

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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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4th Annual Sayville Supports Sammy

Save the date! April 27th at Lands End please join us for our 4th Annual Sayville Supports Sammy Sands! All proceeds go directly to research for a cure for cdkl5 We are working on our website. We should be up…

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I Golf FORE Aiyana

Join us for our 4th Annual I Golf FORE Aiyana Tournament. Find out all about this event by visiting the I Golf FORE Aiyana website  or you can register on the link below

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Support for Starfish Virtual 5K

  Support For Starfish Virtual 5k is taking place June 13-20, 2018!  All proceeds go to the IFCR. To stay up to date on this event, like us on Facebook Visit our Event Page to donate, track our progress, or…

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