CDD Database Collaboration
INTERNATIONAL CDKL5 DISORDER DATABASE (ICDD) AND CDKL5 DEFICIENCY DISORDER INTERNATIONAL PATIENT REGISTRY AT ODC ANNOUNCE DATA COLLECTION COLLABORATION
We are pleased to announce to the CDKL5 Deficiency Disorder (CDD) community that the International CDKL5 Disorder Database (ICDD), founded and directed by Dr. Helen Leonard and Dr. Jenny Downs in partnership with the International Foundation for CDKL5 Research (IFCR), and the CDKL5 Deficiency Disorder International Patient Registry, based at the University of Pennsylvania’s Orphan Disease Center (ODC), have outlined an agreement that will allow the two groups to collaborate on complementary projects collecting information from CDD patients.Read More
NIH Awards First R01 Grant for CDKL5 Study
EXCITING NEWS! YOUR RESEARCH DOLLARS AT WORK!
The National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) has awarded a five-year R01 research grant, entitled “Pathogenic Studies of CDKL5 Disorder,” to Dr. Zhaolan (Joe) Zhou, Principal Investigator (PI), at the University of Pennsylvania Perelman School of Medicine, and Dr. Douglas Coulter, co-PI, at the University of Pennsylvania Perelman School of Medicine and Children’s Hospital of Philadelphia.Read More
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 presidentRead More
June is CDKL5 Awareness Month
June is CDKL5 Awareness Month and June 17th is CDKL5 Worldwide Awareness DayRead More
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.
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!Read More
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?Read More
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…Read More
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…Read More
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…Read More