CDKL5 Centers Of Excellence

The IFCR’s centers of excellence across the United States are the only multidisciplinary clinic for the treatment of people with CDKL5 Deficiency Disorder.  The centers help to improve clinician familiarity with this condition to provide a standard of care for patients and families.  These centers can help to better establish how the condition unfolds, allowing our researchers to study the natural progression of the disease.

Children’s Hospital Colorado

Thank you to the Rocky Mountain Rett Association (RMRA) for partnering with us on this clinic. The CDKL5 Clinic is located within the Rett Clinic.


Contact: Tristen Dinkel

This clinic is led by Dr. Tim Benke.





CDKL5 Clinic website

Children’s Hospital Colorado website


Boston Children’s Hospital


Contact: Lindsay Swanson, MS, CGC
Phone: 617-355-5111

This clinic is led by Dr. Heather Olson.


CDKL5 Clinic website

Boston Children’s Hospital website


Cleveland Clinic


Contact: Lisa Sanders

Phone: 216-444-1994
do not press #1; stay on the line to be connected directly to the physician’s office

This clinic is led by Dr. Sumit Parikh and Dr. Elia Pestana-Knight.






CDKL5 Clinic website

Cleveland Clinic website



St. Louis Children’s Hospital



To schedule an appointment at the Washington University and St. Louis Children’s Rett Spectrum clinic, call 314.454.KIDS (5437) or 800.678.KIDS (5437)

Contact: Amy Limpert, RN – Clinic Nurse Coordinator

Ph:  314-454-6120, Fax:  314-454-2523

This clinic is led by Dr. Robin Ryther and Dr. Judy Weisenberg.


CDKL5 Clinic website

St. Louis Children’s Hospital website

Texas Children’s Hospital


Contact: Gay Fullerton


Phone: 832-822-7388

This clinic is led by Dr. Bernhard Suter

Texas Children’s Hospital website

NYU Langone Health Center


Contact: Erin Conway, NP


Contact: Lydia Perez

Phone: 646-558-0800 and ask for the NYU CDKL5 Center

This clinic is led by Dr. Orrin Devinsky

NYU Langone Health website