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“Hey” was one of my son Ian’s first words, and what he quickly learned was that whomever he said that to responded — with something. Usually it was with a smile and friendly tone to their voice, and you know how quickly our children pick up on that positive feeling.
AAP/CDC course, "Identification, Management, and Caring for Children and Adolescents with Fragile X Syndrome" will be available for pediatricians and other healthcare professionals through August 1, 2025, on the AAP PediaLink platform.
For the upcoming school year, we compiled our most popular school and education resources for parents and teachers.
The first published publication from the International Fragile X Premutation Registry Advisory Committee. This International Fragile X Premutation Registry is an important first step and can serve as a useful tool for clinicians and researchers in the field.
Contact Us If you have questions, need help, or just want to share, we’re here Monday thru Friday, 9 AM to 5 PM ET, with the usual holidays as exceptions. We have a [...]
Consensus of the Fragile X Clinical & Research Consortium An Introduction to Assessing Children with Fragile X Syndrome Reading Time: 55 min.—|—Last Updated: Dec. 2021—|—First Published: June 2011—|—Download PDF Note: There [...]
Consensus of the Fragile X Clinical & Research Consortium Medications for Individuals with Fragile X Syndrome Reading Time: 190 min.—|—Last Updated: Feb. 2021—|—First Published: 2012—|—Download PDF The following [...]
The 17th NFXF International Fragile X Virtual Conference May 29–30, June 27, July 22, 2020 This is the archive page for the 2020 17th NFXF International Fragile X Virtual Conference. See the sessions, panels, [...]
31 Shareable Fragile X Facts Why 31? Because there are 31 days in July, and every July is National Fragile X Awareness Month! So you'll always find at least 31 facts right here (plus [...]
