Our Community

The Blog of Our Fragile X World

Family of three people with raised arms

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



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