Fragile X Syndrome and Associated Disorders
Finding support and community resources can increase confidence in managing FXS. It might be helpful for parents of children with FXS to talk with one another. One parent might have learned how to address some of the same concerns another parent has. Often, other parents of children with special needs can give helpful advice about good resources.
Remember that the choices one family makes might not be the best for another family, so parents should understand all the options and discuss them with their child's health care providers.
- Contact the National Fragile X Foundation by telephone at 1-800-688-8765 or by email at Treatment@FragileX.org to get information about treatments, educational strategies, therapies and intervention.
- Connect with a Community Support Network (CSN) at the National Fragile X Foundation. LINKS groups are organized and run by parent volunteers and provide support to families.
Over the past two decades, scientists have made advancements in understanding the genetics of FXS. However, we are just beginning to understand how this complex condition affects individuals and their families. The Centers for Disease Control and Prevention (CDC) partners with physicians, university researchers, and state health departments to better understand FXS.
Building a National Fragile X Registry
CDC supports the Fragile X Clinical and Research Consortium. The consortium is a group of more than 25 fragile X clinics across the United States. These clinics collect information in a registry to paint a picture of the full scope of FXS. The registry allows CDC scientists and research partners to gather information on a large enough group of people with FXS to make the research scientifically valid. The registry also serves as a centralized database for individuals who want to be contacted for other FXS research projects.
Some examples of information in the registry are age at diagnosis, treatment and services provided, and the range of behavioral and intellectual challenges faced by individuals with FXS. Researchers, therapists, doctors, and nurses can use information from the registry to develop better treatments and educational programs for individuals with FXS.
National Fragile X Family Survey
CDC works with researchers from the University of North Carolina at Chapel Hill and Research Triangle Institute International on a national survey of families affected by FXS. This survey asks families questions about the social support and medical services they receive, transition of their child to adulthood, and access to health care. Researchers have analyzed these survey results and have published papers on medication use, therapy services, daily functional skills, and how families adapt to living with FXS. Results from this survey will be used to find better ways to help individuals and families affected by FXS.
- Page last reviewed: March 19, 2015
- Page last updated: March 19, 2015
- Content source:
- National Center on Birth Defects and Developmental Disabilities
- Page maintained by: Office of the Associate Director for Communication, Digital Media Branch, Division of Public Affairs