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.
Boston Children’s Hospital
Contact: Lindsay Swanson, MS, CGC
This clinic is led by Dr. Heather Olson.
Contact: Lisa Sanders
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.
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.
Texas Children’s Hospital
Contact: Gay Fullerton
This clinic is led by Dr. Bernhard Suter
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