National Fragile X Foundation Programs
Fragile X Clinical & Research Consortium
The Fragile X Clinical and Research Consortium (FXCRC) was created in 2006 by the National Fragile X Foundation 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 primary ovarian insufficiency (FXPOI), and Fragile X-associated tremor/ataxia syndrome (FXTAS). Each clinic is staffed by knowledgeable specialists experienced in the evaluation and treatment of all the conditions.
The NFXF International FXTAS Consortium (IFC) has also created a separate list of U.S. and international clinics specializing in FXTAS.
Clinics & Support Groups
International Fragile X clinics & support groups »
FXTAS-specific clinics »
FORWARD Registry & Database
FORWARD = Fragile X Online Registry With Accessible Research Database
Beginning in 2008 and continuing to the present, the U.S. Centers for Disease Control and Prevention has supported the Fragile X Clinical and Research Consortium (FXCRC) through grants designed to increase our understanding of Fragile X syndrome.
One of the best ways for families to help advance our understanding and to improve treatment is to become part of the FORWARD Registry & Database.
Individuals and families can join the registry without becoming part of the database, but the two are designed to work together to increase our scientific and clinical understanding of Fragile X syndrome. When visiting a Fragile X Clinic you will be provided with information about FORWARD and you will be given an opportunity to participate if you are interested.
Sibling & Self-Advocate Network
The Sibling & Self-Advocate Network brings together those with Fragile X syndrome and their siblings to create lifelong friendships and a greater community of support, while building a better future.
The NFXF Biobank is the first major project of the NFXF Collaborative Biomarker Research Program. This initiative drives faster and more efficient research into treatments and a cure for Fragile X syndrome, the leading inherited cause of intellectual disability and the leading known single gene cause of autism.
NFXF Community Support Network
Community is one of the three pillars of what the National Fragile X Foundation exists to do. Knowing there are others impacted by Fragile X out in the world and sharing your challenges and triumphs is incredibly empowering. The bedrock of the NFXF community is our Community Support Network.
Summer Scholar Research Awards
The National Fragile X Foundation funds one or more summer student’s research at $2,500 each. 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).
NFXF Research Review Program™
The NFXF Research Review Program was set up to assist and support the development of new treatments. NFXF serves as a single point of contact for industry, academic, and other research partners seeking to advance Fragile X-focused treatments and studies at any stage through the Research Review Program.
With an increasing number of current and potential Fragile X research and trials, it is critical that we protect the best interests of patients and their families while optimizing Fragile X participant resources. The Research Review Program provides researchers with access to various Fragile X experts, including members of the Fragile X Clinical and Research Consortium, family stakeholders, FXS clinicians, trialist experts, and outcome measure experts (including members of the NFXF Team) who all function under a confidentiality agreement. Access to these experts through the Research Review Program is tailored to best fit the needs of the researcher.