The resources below provide information about treatment options for this condition. If you have questions about which treatment is right for you, talk to your healthcare professional.
Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Outcome Measures for Clinical Trials in Children with Fragile X Syndrome – Part II Thursday, November 5, 2009 -
Friday, November 6, 2009
Location: Bethesda Marriott Pooks Hill,
Bethesda,
MD
Description: The goals of the first meeting were to (1) describe outcome measures for safety and efficacy when treating children with FXS, (2) assess validation of those measures for clinical studies, and (3) describe approaches for preclinical toxicology studies to define efficacy and safety.
Contact: Tiina K. Urv, Ph.D., NICHD(301) 402-7015urvtiin@mail.nih.gov
Co-funding Institute(s): National Institute of Child Health and Human Development
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