CDKL5 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!

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?

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 LINKS EMBEDDED CONFERENCE PROGRAM | Subject to Change ONLINE REGISTRATION IS CLOSED | Purchase tickets for all three days or single…

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 was held on February 28, 2015 in spite of the cold and rain. The event was covered on the local…

IFCR to Participate in Rare Disease Day 2015

The International Foundation for CDKL5 Research will be participating in the 7th annual observance of Rare Disease Day in the U.S. on February 28, 2015. “Living with a Rare Disease – Day-By-Day, Hand-In-Hand” Rare Disease Day 2015 puts the focus on the daily lives of…

CDKL5 Research Times, Volume 3

Click here to read the complete CDKL5 Research Times, Volume 3 in its entirety (pdf)   2014 Research in Review Dear Families, Friends and Supporters,   2014 is coming to a close, and we would like to thank each of you for your continued support of the…

2014 Research in Review

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Rare Epilepsy Network (REN) Registry is Open for Enrollment

We are excited to announce that the Rare Epilepsy Network (REN) Registry is open for enrollment at http://REN.rti.org. The Rare Epilepsy Network, or REN for short, is a collaboration between the Epilepsy Foundation, the IFCR, RTI international, Columbia University, and many different organizations that represent patients with a rare…

NIH Awards Natural History Study Research Consortium

National Institute of Health (NIH) announced awards to expand the Office of Rare Diseases Research part of the National Center for Advancing Translational Sciences (ORDR-NCATS) collaborative Rare Diseases Clinical Research Network (RDCRN).

IFCR celebrates 5th Anniversary with a New Campaign

It has been 5 years since a group of parents set out to find a cure for their children. These parents realized that there was a desperate need for education and research, and this could not be completed without funding. They decided to combine their…