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.
Center for Autism and Neurodevelopmental Disorders (CANDO)
Highlighting the Fragile X Clinic CANDO at UMass, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
Study: Single Dose Study for Adult Women and Men with FXS
Dr. Craig Erickson at Cincinnati Children’s Hospital Medical Center is conducting a clinical trial to learn about if medication can change the brain’s response to sound, which may be abnormal in FXS.
DOD grant awarded for a FXTAS trial
PureTech Health has been awarded a DOD grant of up to $11.4 million from the DOD for their trial of LYT-300, oral formulation of allopregnanolone, in people with Fragile X-associated tremor/ataxia syndrome (FXTAS).
The University of Miami Miller School of Medicine South Florida Fragile X Clinic
Highlighting the South Florida Fragile X Clinic, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
2023 Randi J. Hagerman Summer Scholars Meet the NFXF Team
2023 Randi J. Hagerman Summer Scholars Aditi Majahan, Alexandra Singleton and Maureen Butler met with team members from the NFXF to share the progress of their research.
The Fragile X Clinic at Texas Children’s Hospital
Highlighting the Fragile X Clinic at Texas Children's Hospital, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
A Reflection on the CEO Commission’s 2023 Hill Day
NFXF Board Member Jed Seifert recently represented the NFXF at the CEO Commission's Hill Day. Jed shares his reflections on this powerful experience.
We’re Urging Lawmakers to Support the Accelerating Kids’ Access to Care Act
The NFXF is one of 215 organizations urging lawmakers to support the Accelerating Kids’ Access to Care Act. Every child deserves the best care—regardless of who they are, where they live, or their family’s income.
Antisense Oligonucleotide Rescue of CGG Expansion–Dependent FMR1 Mis-Splicing in Fragile X Syndrome Restores FMRP
One of the most exciting advancements being done in Fragile XS research today is antisense oligonucleotide (ASO) therapy.
Fragile X Advocacy Newsletter
Read and share the first edition of the Fragile X Advocacy Newsletter with your Members of Congress offices!
Share Your Daily Living Strategies
Please share your daily living tips, tricks, or strategies that have be successful for you, so that we can share with the community!