CDKL5 deficiency disorder

Clinical Research Resources

Loulou Foundation

The Loulou Foundation a private non-profit UK foundation dedicated to advancing research into the understanding and development of therapeutics for CDKL5 deficiency disorder.

Last updated on 04-27-20

Orphan Disease Center: CDKL5 Pilot Grant Program

The Orphan Disease Center has partnered with the Loulou Foundation to create the CDKL5 Program of Excellence. This program aims to drive the development of effective therapeutic strategies for the treatment of CDKL5 deficiency. The Orphan Disease Center is part of the University of Pennsylvania’s School of Medicine.

Last updated on 04-27-20

Selected Full-Text Journal Articles

Full-text CDKL5

Mangatt M, Wong K, Anderson B, et al. Prevalence and onset of comorbidities in the CDKL5 disorder differ from Rett syndrome. Orphanet Journal of Rare Diseases. 2016;11:39.

Last updated on 04-27-20

Where To Start

International Foundation for CDKL5 Research

The International Foundation for CDKL5 Research has an Introductory Guide on CDKL5 deficiency disorder that includes information on history, diagnosis, symptoms, treatments, therapies, resources, and more.

Last updated on 04-27-20

Name: International Foundation for CDKL5 Research P.O. Box 926
Wadsworth, OH, 44282, United States
Phone: 330-612-2751 Email: Url:
Name: CDKL5 UK Email: Url:
Name: CDKL5 Canada 55 Glen Rd.
Toronto, ON , M4W 2V3, Canada
Email: Url:

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