Diagnosis

We know how it feels to receive this diagnosis and we are here to help. We understand that this new diagnosis opens up a world of uncertainty, questions, and fears. You are not alone! You will find yourself amongst friends here, all with the common goal of helping our children and finding a cure. We have created a list of Frequently Asked Questions that will be a good starting point for learning more about CDKL5.


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.

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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.

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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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