The South Florida Fragile X Clinic (SFFXC)
The South Florida Fragile X Clinic (SFFXC) was established in 2009 and is located at the University of Miami Miller School of Medicine in the Mailman Center for Child Development. The SFFXC is one of 26 clinics located across the United States and Canada, associated with the National Fragile X Clinical and Research Consortium, a project from the National Fragile X Foundation. This state of the art clinic provides individuals and families affected by fragile X with comprehensive care and treatment supported by the latest medical, educational, and research knowledge available.
The multidisciplinary team is led by geneticist, Dr. Deborah Barbouth, and coordinated by genetic counselor, Rena Pressman. The clinic is also staffed by a developmental pediatrician, psychologist, educational specialist, audiologist, and research assistant, all with extensive experience in Fragile X Syndrome and child development.
Visits to the Fragile X clinic typically include a comprehensive physical and developmental exam, educational, and psychological evaluations, a thorough, targeted genetic counseling session, and a review of the recommended healthcare guidelines for children with Fragile X syndrome.
The clinic is actively involved with the national Fragile X Registry and is participating in clinical trials and research projects designed to improve patient care and the overall understanding of fragile X syndrome. In addition to our services, the clinic provides referrals to local community resources for those family members impacted by one or more of the other fragile X-associated disorders including fragile X-associated tremor/ataxia syndrome and fragile X-associated primary ovarian insufficiency.
The Mission of the University of Miami’s Fragile X Clinic is to provide outstanding comprehensive care and treatment to children and adolescents who have fragile X and to offer their families compassionate support, services and referrals to local and community programs.