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The Blog of Our Fragile X World

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News for the fragile X community. Research, what findings mean
for families, event highlights,
and study announcements.


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Families

Last week, Our Fragile X World researcher Don Bailey traveled to Washington D.C. to participate in National Fragile X Advocacy Day. In addition to spending time with families affected by fragile X on Capitol Hill, Don participated in a meeting to update the NIH Research Plan on Fragile X Syndrome and Associated Disorders.

Capitol Hill, Washington, D.C.

The National Fragile X Foundation and FRAXA Research Foundation are two foundations that conduct research on fragile X syndrome. In October, The New York Times published an article about how medical charities and foundations have changed the face of research on rare diseases like fragile X.

Co-founder of FRAXA Katie Clapp and her son

Stories from Families

As fragile X researchers, it's important for all of us on the Our Fragile X World team to try to understand not only scientific information about fragile X, but also the lived experiences of individuals and families. Of course, we can't fully understand their journey, but we think reading stories and hearing directly from affected individuals can make a huge difference.

Dad with two daughters with fragile X