- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
In 2006, the National Fragile X Foundation organized the majority of the U.S. medical institutions and clinicians that had an emphasis on Fragile X treatment into a “Fragile X Clinical & Research Consortium (FXCRC)”. We provide its administrative structure, such as meeting planning, material development, publicity and internal communication. We are also working hard to help establish additional clinics throughout the U.S. and to help existing clinics become more comprehensive in their delivery of services. Our goal is that all families will have access to quality evaluation, treatment recommendations and referrals within a reasonable geographic distance from their homes.
A Fragile X clinic provides individuals and families affected by one or more of the Fragile X-associated Disorders with a comprehensive evaluation and treatment recommendations. These are supported by the latest medical, educational, and research knowledge available. All of the clinics provide medical services (including medication evaluation and consultation) supervised by a MD. Multidisciplinary services and/or referrals, such as occupational therapy, speech and language therapy, behavioral therapy and genetic counseling, are available within the institutions or through referral. Many of the clinics also participate in collaborative research efforts with other Fragile X clinics and professionals. All of the clinics have an emphasis on fragile X syndrome (FXS) while also providing services and/or referrals for fragile X-associated tremor/ataxia syndrome (FXTAS) and fragile X-associated primary ovarian insufficiency (FXPOI).
Besides serving families closer to where they live, these clinics also benefit the Fragile X community by sharing knowledge, research, and clinical experience with one another. This in turn helps the patients whom they serve.
The National Fragile X Foundation encourages you to contact us directly. Our professional staff is prepared to help you choose the most appropriate clinic for your individual and family needs. Please call us at 800-688-8765.
The NFXF has a free brochure Your Visit To a Fragile X Clinic to help further guide you down this path. Contact our office for your copy. We also have a great summary by Support Services Coordinator (and parent) Jayne Dixon Weber about Reasons to Visit a Clinic.