There is strength in numbers, which is why we work with other patient advocacy groups on common goals, such as funding at the National Institutes of Health (NIH), the Centers for Disease Control and Prevention [...]
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On National Fragile X Foundation leads an advocacy program to advance research funding for Fragile X and programs to provide better lives and opportunities for individuals living with Fragile X and other intellectual and [...]
Fragile X & Autism Individuals with Fragile X syndrome (FXS) are frequently co-diagnosed with autism (aka autism spectrum disorder, or ASD), and families and some professionals are often confused by the relationship between the [...]
The President's budget cuts CDC funding for Fragile X research and awareness. Rep. Tom Cole (R-OK-4) and Sen. Roy Blunt (MO) oversee this funding and are working on the bill now! Contact their offices to [...]
http://www.cdc.gov/ncbddd/spanish/fxs/index.html Los Centros para el Control y la Prevención de Enfermedades (CDC, por sus siglas en inglés) ha traducido en español su página web sobre el Síndrome X Frágil. El sitio es igual [...]
Good news! The 2012 federal budget process has finally concluded, and Fragile X has emerged from the process with federal funding and programs intact. This was only because of the relationships we’ve nurtured and grown [...]
In their article, “Public Health Research on Fragile X Syndrome”, the CDC explains their Fragile X syndrome (FXS) data collection progress, and results from a recent stakeholder meeting where they identified public health gaps. The [...]
Findings on the preventive care and health behaviors of children and young adults with Fragile X syndrome. It is based on findings from a survey of FORWARD data.
Fragile X syndrome (FXS) is a genetic condition that causes intellectual disability, behavioral and learning challenges and various physical characteristics. Though FXS occurs in both genders, males are more frequently affected than females, [...]
By Jeffrey Cohen Director of Governmental Affairs and Advocacy, NFXF The 2012 federal budget remains an unsettled matter. The 2011 fiscal year ends on 9/30 and 2012 begins on 10/1. Under “normal” circumstances the 2012 [...]