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—FXS, FXTAS, and FXPOI. Each clinic is staffed by knowledgeable specialists experienced in the evaluation and treatment of all the conditions.
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).