Research & Clinics
What are Fragile X Clinics?
- 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.
- 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.
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 FX clinic for your individual and family needs. Please call us at 800-688-8765 or send an email to firstname.lastname@example.org.
Summer Scholar Research Awards
Each year, the National Fragile X Foundation funds one or more summer student’s research at $2500 each through the NFXF Summer Scholar Research Awards (formerly NFXF Summer Student Fellowships). The student’s work can be in the area of Fragile X syndrome (FXS), Fragile X-associated tremor/ataxia syndrome (FXTAS) or Fragile X-associated primary ovarian insufficiency (FXPOI).
This award is meant to introduce undergraduate students or students in professional training programs to research in the Fragile X field by providing funding for a summer project. It is not meant to supplement funds for PhD candidates or post-doctoral fellows working on research related to Fragile X.
Fly With Me Fund
The Fly with Me Fund provides financial assistance for families to travel to a Fragile X member clinic of the FX Clinical and Research Consortium (FXCRC) to receive the most appropriate evaluation and treatment services.
Applications must be submitted by the Medical Director or the Clinic Coordinator of the FXCRC clinic.
To begin the application process, please talk to the Clinic Coordinator when you schedule your appointment.
Special thanks to the Silver Family for their continuous fundraising efforts that help make this program possible.