FRAXA is a national, nonprofit organization run
by parents and medical professionals. In 1994, three parents of children
with fragile X syndrome founded FRAXA because fragile X research is
drastically underfunded. FRAXA funds medical research aimed at finding
a specific treatment for fragile X.
The National Fragile X Foundation was founded
in 1984 to provide support for families impacted by fragile X, and
for the educators, therapists, and doctors who work with them. It's
website contains over 1200 pages of content.