The NFXF Blog
Allos Pharma Inc. Receives FDA Guidance and Support for their Phase 3 Trial of Arbaclofen in Fragile X Syndrome
Allos Pharma Inc. received invaluable FDA feedback on the design of their Phase 3 trial for arbaclofen for the treatment of Fragile X syndrome.
The effect of college degree attainment on neurodegenerative symptoms in genetically at-risk women
Researchers at the University of Wisconsin explored the relationship between obtaining a college degree and the manifestation of the neurodegenerative symptoms of FXTAS among women at elevated genetic risk.
Fragile X-associated tremor/ataxia syndrome rating scale: Revision and content validity using a mixed method approach
Researchers across several institutions set out to develop a revised version of the FXTAS-RS designed to specifically assess FXTAS motor signs.
Fragile X Clinic at Rush University Medical Center
Highlighting the Fragile X Clinic at Rush University Medical Center, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
Rare Across America 2023
Register now to join other rare disease advocates for meetings between August 7th - 18th. Sign up today for Rare Across America!
Developing the Fragile X Syndrome-Health Index (FXS-HI): A Caregiver-Reported Outcome Measure
The Center of Health and Technology’s (CheT) Outcomes Division is conducting caregiver interviews to learn about and determine the most important symptoms to individuals with FXS to create an outcome measure for FXS.
FMR1 CGG Repeats and Stress Influence Self-Reported Cognitive Functioning in Mothers
Researchers at the University of Wisconsin looked at the relationship and influence of FMR1 CGG repeats and stress on self-reported cognitive functioning in mothers.
The diagnostic experience of women with fragile X–associated primary ovarian insufficiency (FXPOI)
Researchers at Emory University conducted qualitative interviews with 24 women with FXPOI exploring how FMR1 screening, physician education, and supportive care impacted their experience receiving a diagnosis. Their results are in!
Aging in Fragile X Syndrome — Webinar
Dr. Berry-Kravis presents a one hour Q&A about what we’ve learned from the FORWARD data on aging for individuals living with Fragile X syndrome.
Fragile X Clinic at Stanford University School of Medicine
Highlighting the Fragile X Clinic at Stanford University School of Medicine in California, a member of the National Fragile X Foundation’s Fragile X Clinical & Research Consortium (FXCRC)
Females with FXS: Strategies for Developing Executive Functioning and Social Skills — Webinar
Barb Haas-Givler presents a one-hour Q&A session on resources and strategies for the classroom, home, and community.
Fragile X Premutation Panel Discussion
Panelists Drs. David Hessl, Emily Allen, Deborah Hall and Randi Hagerman share their expertise on the Fragile X premutation at the 18th International Fragile X Conference.