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This series of on-demand videos helps anyone seeking a clearer understanding of Fragile X syndrome and the Fragile X premutation.
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Through personal stories, this Keynote panel of speakers delves into the boundless potential and opportunities realized by those living with Fragile X. Learn how individuals and families have navigated challenges, uncovered strengths, and forged inspiring pathways and connections.
Experts discuss the unique health, wellness, puberty, and fertility considerations for girls and women with Fragile X syndrome (FXS), including how needs can vary widely across individuals. Panelists discuss guidance on puberty conversations, reproductive healthcare, emotional wellness, sleep, exercise, and supporting independence.
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Dr. Heather Hipp, a reproductive endocrinologist at Emory University, discusses reproductive considerations for women with a Fragile X premutation, including FXPOI and the process for diagnosis.
Descubre qué es la premutación del síndrome del cromosoma X frágil en tan solo 90 segundos. Este breve video animado de la Fundación Nacional del Síndrome del Cromosoma X Frágil explica cómo la premutación del cromosoma X frágil afecta a las personas y a las familias, y por qué es importante concienciar sobre este tema.
Learn what the Fragile X premutation is in just 90 seconds. This short animated video from the National Fragile X Foundation explains how the Fragile X premutation affects individuals and families — and why awareness matters.
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.
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. With Kate Shelly and Samantha Grudzien.
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.
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.
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.
Panelists, Dr. Emily Allen, Dr. Heather Hipp, and Cecilia Bouska, shared their expertise on a range of important topics on FXPOI, including diagnostic criteria, how to communicate concerns with your healthcare provider, and treatment options tailored to individual needs.
Reproductive health is a broad topic, covering the physical and emotional components of areas like puberty, sexuality, reproductive options, and family planning. These topics can be challenging to cover, but they are important!