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CDKL5 Centers of Excellence

* The following list is for information purposes only, the CRC is not a sponsor of these Centers of Excellence.  For more information please reach out to the individual clinic.

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Children's Hospital Colorado

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 Tim Benke, MD.  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.  720.777.4363

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Boston Children's Hospital

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.

Cleveland Clinic

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


To schedule your appointment for the CDKL5 Clinic, please call 216.445.0601 and speak with someone directly, or contact Penelope Hoyett at

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St. Louis Children's Hospital

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 Ryther, 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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