Rett Syndrome Clinic

Designated a Center of Excellence by the International Rett Syndrome Foundation in 2023, the Rett Syndrome Clinic at UNC Hospital offers multidisciplinary care across specialties for children diagnosed with Rett syndrome and related disorders. Our team of skilled clinicians work together to ensure your child is receiving the most comprehensive treatment and care. In addition, we collaborate with specialists across multiple departments at UNC like, pediatric and adult specialists in pulmonology, cardiology, orthopedics, gynecology, palliative and complex care, gastroenterology, sleep medicine, and many others.

Beyond the doctor’s office, we support a robust clinical research team focused on providing cutting edge research studies and treatment trials for our Rett patients.

Our team is committed to collaborating with you and your family in making the right care decisions for your child.

Research

Rett Syndrome Registry

In collaboration with Hive Networks, IRSF has launched a longitudinal study of real world clinical and caregiver data. This study aims to build upon the success of the Rett Syndrome Natural History study which ran for 15 years, and contains longitudinal data from more than 1,000 individuals with Rett syndrome. Our center proudly participates in this registry.

Clinical Trials Committee

The Rett Syndrome Clinical Trial Committee, hosted by IRSF, connects clinical trials sponsors with the Centers of Excellence leadership and caregivers to guide robust clinical trial study design.

Clinical Trials

Our Center participated in the ACADIA sponsored Lavender clinical trial of Trofinetide in Rett syndrome, that led to the FDA approval of the first drug to treat symptoms associated with Rett syndrome.

Foundation

The International Rett Syndrome Foundation Centers of Excellence

The IRSF has designated several clinics across the United States as Centers of Excellence who support clinical trials and improve the healthcare of individuals living with Rett syndrome.

Referral

Rett patients should ask their provider to refer them to the UNC Neurology Rett Syndrome Clinic.

Providers : please specifically state the Rett Syndrome Clinic in the patient referral. 

• Providers who have access to UNC CareLink can submit a referral online. If you would like to enroll, click on the link and select “Request an Account.” You may wish to download an overview of the referral portal or view a step-by-step guide on how to sign up.
• If you don’t have a UNC CareLink account, please fax a completed referral form, including a specific referral question and records to (984) 974-5437. Please call (984) 974-7337 if you have any questions.

For more information on the referral process, please visit the Child Patient Referral page.

Team