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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


National Fragile X Foundation


Address

1861 International Drive
Suite 200
MacLean, VA 22102 USA

800 Number

800-688-8765

Email Address

[email protected]

Description

The National Fragile X Foundation is a non-profit organization that serves the entire Fragile X community to live their best lives by providing the knowledge, resources, and tools until, and even after, more effective treatments and a cure are achieved.. Fragile X syndrome (FXS) is an inherited genetic condition that causes intellectual disability, behavioral and learning challenges, and various physical characteristics.  FXS is the most common heritable form of intellectual disability and the most common single-gene link to autism. Established in 1984, the National Fragile X Foundation produces a variety of educational and support materials across our four strategic priority areas: promoting advocacy, providing education,  advancing research, and improving treatment. These materials include a comprehensive website full of resources and tools to support life with Fragile X, virtual and in-person community events, a strong advocacy program, robust research facilitation services and treatment facilitation services and resources, including a Fragile X Clinical and Research Consortium. The NFXF serves the family of Fragile X conditions, therefore is also the national organization for Fragile X premutation carrier conditions, including Fragile X-associated tremor/ataxia syndrome and Fragile X-associated primary ovarian insufficiency.  

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