Fragile X Advocacy Newsletter – November 2023
Read and share the latest edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
The FMR1 and Related Conditions Clinic at Kennedy Krieger Institute
Highlighting the FMR1 and Related Conditions Clinic at the Kennedy Krieger Institute, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
A Message to the Fragile X Community from Harmony Biosciences
A Message to the Fragile X Community from, Jeffrey M. Dayno, MD, President and Chief Executive Officer of Harmony Biosciences
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
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!
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.
Fragile X Clinic at Children’s Hospital Colorado
Highlighting the Denver Fragile X Clinic at Children's Hospital Colorado, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
The 2023 RJH Summer Scholar Presentations Are Now Live!
We asked our 2023 NFXF-funded Randi J Hagerman Summer Scholars to summarize their summer project in a 15-minute video presentation, and here they are!
Thank You Donors — Your Support is Making a Difference
NFXF Executive Director Hilary Rosselot shares recent program accomplishments in 2023 thanks to donors' support.