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Thanks to The European Fragile X Network, FMR1 now stands for fragile X messenger ribonucleoprotein 1, removing the reference to “mental retardation” which has long been outdated in common vernacular.
FORWARD // We examined the nature and degree of association between health-related quality of life and established measures of functioning in FXS; 155 parents completed the questionnaires on their child as part of the larger CDC-funded FORWARD study.
Making Sense of Multiple Diagnoses By Brenda Finucane When it comes to diagnosing Fragile X syndrome (FXS), there is good news and bad news. The good news is that more children than ever are [...]
An update on our advocacy efforts, including Advocacy Day 2022 and key legislation we are currently supporting.
A concern for parents of children with Fragile X syndrome is their level independence as an adult. This is Clay and his mother June's story.
Newly Diagnosed We are here to help you. When you’re ready, there is a whole community that understands what you’re going through, and will be here to provide guidance and support throughout your [...]
Representatives from the CDC join Dr. Elizabeth Berry Kravis discusses the advances made in understanding Fragile X Syndrome through FORWARD.
Assessment of Fragile X Syndrome for Clinicians Detailed Recommendations for Clinicians, Providers and Other Professionals Authors: David Hessl, Lisa Cordeiro, Adrienne Villagomez, Elizabeth Coan, Leonard Abbeduto, Anne Hoffman, Angela John Thurman, and Lauren Schmitt [...]
What is the President's budget, is it important for Fragile X advocacy, and how does Fragile X research get funded? These are all answered here.
