Visit Rett Syndrome Clinic at Cincinnati Children’s Hospital Website 1-513-636-4222 The clinic has a core team that includes a pediatric neurologist, behavioral/developmental medicine physician, nutritionist, social worker, occupational therapist and speech-language pathologist. All see the patient during the initial evaluation, then the team develops an individualized care plan.
Visit Rett Syndrome Program/Oregon Health and Sciences University Website 1-800-452-3563 1-503-494-8095 [email protected] Rett Syndrome Program at Child Development and Rehabilitation Center of Oregon Health and Sciences University Clinic holds 4 clinics per year for Rett syndrome.
Visit Biobanking of Rett Syndrome and Related Disorders Website The purpose of this study is to advance understanding of the natural history of Rett syndrome (RTT), MECP2-duplication disorder (MECP2 Dup), RTT-related disorders including CDKL5, FOXG1, and individuals with MECP2 mutations who do not have RTT. Samples with DNA will be collected. This study will be … Read More
Visit Children’s Hospital at Montefiore Website 1-347-640-2671 1-718-920-4378 This is the only center for Rett syndrome in the tri-state area and is offered through the Division of Neurology. Email: [email protected]
Visit St. Louis Children’s Hospital Website 1-314-454-6120 Appointments, Wendy Sanders – Care Coordinator The St. Louis Children’s Hospital’s Rett Spectrum Clinic is a collaboration between Washington University School of Medicine and St. Louis Children’s Hospital. Within a clinic visit, patients and their families will meet with several caregivers including neurology, therapy, and nutrition along with other … Read More