The NFXF Blog
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.
Marner Family Hosts 4th Annual QC Fragile X Golf Outing
The annual QC Fragile X golf outing, hosted by the Marner family, has been an incredibly inspiring demonstration of support. Thank you Andrea and Kevin - and your many supporters over the past four years!
NFXF Webinar: 2023 Industry Updates
The NFXF hosted a Fragile X research updates webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.
Sibling Perspective Panel and Q&A — Webinar
Panelists look at and discuss FXS from the perspective of siblings in the household.
Denver 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)
Reproductive Health — Webinar
Drs. Heather Hipp and Victoria Wilkins joined us for an informative webinar on the topic of Reproductive health. This is a broad topic, covering the physical and emotional components of areas like puberty, sexuality, reproductive options, and family planning.
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).
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)