In my role as a genetic counselor, I frequently meet with women who have Fragile X pre- or full mutations. Most of these women are typically functioning mothers who found out about their own Fragile X mutations only after they had a child affected by Fragile X syndrome. Whether they have pre- or full mutations,
Posted on September 8, 2017
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FXCRC and Clinics / Treatment and Intervention
The Guidelines represent expert consensus and not evidence-based studies. The clinical committee of the Fragile X Clinical & Research Consortium (FXCRC) could be thought of as a “consensus panel” since virtually every clinician in the USA seeing and managing a large number of patients with Fragile X syndrome and other Fragile X-associated Disorders is represented.
Why should you visit a Fragile X clinic? Because you won’t hear, “Fragile what?” You will have the opportunity to meet with a team of people who will be able to provide guidance in many areas of raising your child or children. Just as importantly, once you establish a relationship with the Fragile X doctor,
Pictured Above: Fragile X professionals from around the world taking a mud bath, and making the sign of the X, prior to a swim in the Dead Sea, the lowest point on earth at 1,388 feet (423 meters) below sea level. Approximately 100 scientists and clinicians met in Jerusalem, Israel, at the Mt. Zion Hotel,