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Toileting Issues in Fragile X Syndrome Consensus of the Fragile X Clinical & Research Consortium Introduction: Toilet training, which can be challenging even in the general population, is characteristically an [...]
Printable Resources Treatment Recommendations (English) — Expert recommendations for the three primary Fragile X-associated disorders—FXS, FXTAS, and FXPOI. Treatment Recommendations (Spanish) — Recomendaciones de tratamiento de expertos para los tres trastornos primarios asociados [...]
The pandemic caused by the spread of the coronavirus disease (COVID-19), beginning in early 2020, had an impact beyond anything experienced in recent history. It is important to understand how this pandemic era has impacted school-aged children with FXS so that we may continue to successfully navigate the changes that come with living through a pandemic and to understand what we can improve in the case of a future pandemic.
Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives By Reymundo Lozano, Talia Thompson, Jayne Dixon-Weber, Craig A. Erickson, Elizabeth Berry-Kravis, Sara Williams, Elizabeth Smith, Jean A. Frazier, Hilary [...]
Jennifer Epstein provides an overview of methods that support the practice of readiness skills, and helps caregivers understand the common hurdles affecting skill attainment specific to Fragile X syndrome.
Fragile X Info Series An Overview for Families and Providers You can download the PDF to print and share, and the full text is also on this page. [...]
Research Summary // FORWARD data on 633 individuals with FXS filled the gap for much needed information on when children with FXS learn bladder and bowel toileting skills.
Consensus of the Fragile X Clinical & Research Consortium Transition to Adult Services for Individuals with Fragile X Syndrome Reading Time: 38 min.—|—Last Updated: Dec. 2021—|—First Published: Dec. 2021—|—Download PDF Services [...]
Emily Mack remembers her first time at an NFXF Int'l Fragile X Conference. “The best part was that it was the first time where I truly felt like everyone around me just understood, without explanation of who we were, what Fragile X was, and the highs and lows that it can bring to everyday.” Read her story.
Early Childhood Developmental and Educational Guidelines for Children with Fragile X Syndrome Consensus of the Fragile X Clinical & Research Consortium For all children within the early childhood age [...]
