A Fragile X clinic provides individuals and families affected by one or more of the Fragile X conditions 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 Medical Doctor. 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.
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.
Fragile X Clinical & Research Consortium (FXCRC)
The Fragile X Clinical and Research Consortium (FXCRC) was created in 2006 by the National Fragile X Foundation (NFXF) in response to the growing needs of families whose members have one of the three identified Fragile X conditions — fragile X syndrome (FXS), fragile X-associated tremor/ataxia syndrome (FXTAS) and fragile X-associated primary ovarian insufficiency (FXPOI). Each clinic is staffed by knowledgeable specialists experienced in the evaluation and treatment of all the conditions.
Though each clinic operates independently, they often collaborate with one another, sharing resources, participating in research projects, and attending meetings of the consortium.
Here at the NFXF
The NFXF is also working hard to help establish additional clinics throughout the US and to help existing clinics become more comprehensive in their delivery of services.
The goal of the NFXF is that all families will have access to quality evaluation, treatment recommendations and referrals within a reasonable geographic distance from their homes.
How do you select an appropriate Fragile X clinic?
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 or send an email to firstname.lastname@example.org.