The NFXF Blog
Fragile X Clinical & Research Consortium and Outcome Measures Meeting
The FXCRC met in Denver, CO to discuss the status of treatment in Fragile X syndrome. A half-day outcome measure meeting was held with representatives from the FDA, industry, the FXCRC and families living with FXS.
RECONNECT Trial Provides Flexibility for Families
Zynerba's RECONNECT trial provides flexibility for families with it's new virtual/at-home enrollment option
Meet The Schutz Family and #TeamWally
Meet #TeamWally, the force of family and friends behind Wally Schutz, who are helping to raise awareness of Fragile X syndrome and FMR1-associated conditions and disorders.
Community Event Highlights – Sibling & Self-Advocate Network (SSAN)
NFXF Sibling & Self-advocate Network hosted and organized virtual events to bring together the Fragile X community.
Community Event Highlights – NFXF Connecticut Chapter
NFXF Connecticut Chapter hosted and organized local events to bring together the Fragile X community.
Community Event Highlights – NFXF Western Massachusetts Chapter
NFXF Western Massachusetts Chapter hosted and organized local events to bring together the Fragile X community.
Community Event Highlights – NFXF Greater Chicago Chapter
NFXF Greater Chicago chapter hosted and organized local events to bring together the Fragile X community.
The Fragile X Clinic at Phoenix Children’s Hospital
Highlighting the Fragile X Clinic at Phoenix Children's Hospital, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
October 2023 is Disability Employment Awareness Month!
Join us in celebrating Xtraordinary Employees during National Disability Employment Awareness Month!
FORWARD-MARCH 2023 — Webinar
Drs. Elizabeth Berry-Kravis and Nicole Tartaglia presented updates about FORWARD-MARCH, followed by a Question and Answer session covering the specifics of the study.
Cost of Delayed Diagnosis in Rare Disease: A Health Economic Study
The National Fragile X Foundation is proud to be part of the Everylife Foundation’s newest report, The Cost of Delayed Diagnosis in Rare Disease: A Health Economic Study.
Corporate Matching Gifts Make a Difference!
Corporate matching gifts amplify the impact of your donations to support the Fragile X community. Check to see if your employer has a matching gift program!