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…
Read MoreRare 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…
Read MoreNIH 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).
Read MoreIFCR 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…
Read MoreIFCR’s 2nd International CDKL5 Science Symposium
IFCR is proud to host it’s 2nd International science conference for researchers and clinicians in Washington, DC, on Tuesday June 24, 2014. This symposium is immediately preceding the Rett Syndrome science symposium and the combined CDKL5/Rett Syndrome Family Conference. If you are planning on being…
Read MoreThe Hope Scholarship
THE HOPE SCHOLARSHIP was established in 2014 to help families affected by CDKL5 afford the IFCR’s family conference. We are excited to announce that the IFCR has received funding to assist individuals and/or families to attend the 2nd IFCR’s International Educational Family Conference in Washington, D.C.…
Read MoreIFCR Announces 2nd International Family Conference
International Foundation for CDKL5 Research (IFCR) Announces 2nd International CDKL5 Family Conference “Opening doors to discoveries… Hope is the Key” WADSWORTH, OHIO, February 20, 2014 –The International Foundation for CDKL5 Research (IFCR) is pleased to announce its Second CDKL5 Family Conference to be held from…
Read MoreNews from the CDKL5 International Database
Edited by Katheryn Elibri Frame, DO, President of IFCR The CDKL5 International Database is a vitally important research tool in which all families (worldwide) affected by CDKL5 are encouraged to participate. IFCR has partnered with researchers Stephanie Fehr, Helen Leonard and Jenny Downs at the…
Read MoreIFCR President, Katheryn Elibri Frame, to speak at NORD Conference
Patient Advocates to Share Stories of Challenges, Hope at DIA-NORD Conference (the following article is taken from www.digitaljournal.com) Bethesda, MD (PRWEB) October 02, 2013 Katheryn Elibri, whose 7-year-old daughter has a rare genetic disease known as CDKL5 and has seizures almost daily, helped begin a foundation…
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