Webinars & Videos
Featured
Creating a plan is a meaningful and loving step toward securing the best possible future for your loved one. Learn of common pitfalls that can jeopardize long-term care and benefits for special needs individuals.
Latest
Four of our industry partners developing treatments for Fragile X syndrome — Shionogi, Mirum Pharma, Kaerus Bioscience, and Servier Pharmaceuticals — shared their latest research updates during a live webinar on October 28, 2025.
How Fragile X syndrome is inherited is a very common question and one of the first things a newly diagnosed family asks. Let’s be clear — Fragile X is an inherited condition.
All Webinars and Videos
These conference sessions explore key findings from the CDC-funded study, FORWARD, covering adult life, medical and sensory challenges, behavioral subtypes, and aging in individuals with Fragile X syndrome. This expert-led series offers valuable insights to support clinical care, research, and long-term planning for individuals with FXS across the lifespan.
These conference sessions explore the latest Fragile X syndrome research on maternal labeling and vocabulary, coping and well-being in FXS mothers, FMRP’s link to IQ, behavioral-cognitive subtypes, and innovative brain rhythm therapies using AI-driven sound stimulation to boost learning in children with FXS.
Join Dr. Peter Todd as he shares the collective hope and anticipation surrounding the promising future of treatments for Fragile X-associated conditions. In this keynote session at the 19th NFXF International Fragile X Conference, Dr. Todd discusses the history, challenges, and advancements that have helped shape the trajectory of treatments for Fragile X-associated conditions.
These conference sessions explore cutting-edge Fragile X premutation research uncovering how RAN translation and CGG repeat RNA toxicity drive FXTAS neurodegeneration, and how the epigenetic regulator Tet2 influences ovarian dysfunction in premutation carriers — highlighting new mechanisms and therapeutic targets.
These conference sessions explore new insights into Fragile X premutation carriers, including cognitive profiles in school-age children, healthcare experiences of women with FXPOI, one-year progression of FXTAS, and tremor characteristics in FXTAS vs. non-FXTAS premutation carriers.
Genetic counselor Susan Howell explains how to help self-advocates and siblings understand genetic results, associated reproductive implications, and the landscape of reproductive options. This session aims to help self-advocates and siblings understand genetic results, associated reproductive implications, and the landscape of reproductive options.
These conference sessions explore groundbreaking Fragile X Syndrome research, including EEG microstate analysis of cognitive disruption, AAV-hFMR1 gene therapy showing behavioral rescue in mice, and long-read sequencing uncovering genetic variation in FMRP expression.
Rebecca Shaffer leads two presentations about how to stay calm and manage intense emotions. The first is for self-advocates, and the second is for caregivers of individuals with Fragile X syndrome.
Dr. Deby Barbouth explores evidence-based lifestyle choices, mind-body techniques, and more to enhance well-being. This holistic approach aims to empower individuals living with the Fragile X premutation for a transformative journey toward lasting well-being and self-care.
The NFXF held its first gene therapy panel discussion at the 19th NFXF International Fragile X Conference. While gene therapy looks to be a promising avenue for future FXS treatment, there is still a lot to learn and a long road ahead.