CDKL5 Centers of Excellence

The 1st CDKL5 Center of Excellence was established in 2014 within the Rett Clinic at Children's Hospital Colorado, under the direction and vision of Dr. Tim Benke.  It is a multidisciplinary clinic where children and adults with CDKL5 Deficiency Disorder are evaluated and treated.

Contact Tristen Dinkel at with any questions or to schedule an appointment.

Boston Children's Hospital is a designated CDKL5 Center of Excellence under the leadership of Heather Olson, MD.  This multidisciplinary clinic sees children from all over the United States and internationally, and participates actively in CDKL5 research.

The Cleveland Clinic CDKL5 Center of Excellence is headed by Dr. Sumit Parikh and Dr. Elia Pestana-Knight.  It is a "clinic without walls" and offers multidisciplinary evaluation and treatment for CDKL5.


To schedule your appointment for the CDKL5 Clinic, please call 216.444.1994 and speak with someone directly, or contact Lisa Sanders at

St. Louis Children's Hospital, in conjunction with Washington University, is home to a Rett Spectrum Clinic, where lead physicians Judith Weisenberg, MD and Robin Rhyther, MD,PHD evaluate and treat children with CDKL5 deficiency disorder.  It is a multidisciplinary setting, including a large augmentative communication team.

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