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1 12, 2019

Toileting Issues in Fragile X Syndrome

By |2020-09-13T10:45:29-04:00Dec 1, 2019|Comments Off on Toileting Issues in Fragile X Syndrome

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 [...]

25 10, 2022

The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X Syndrome

By |2022-10-25T15:34:06-04:00Oct 25, 2022|Blog, Research, Research Results|Comments Off on The Impact of the COVID-19 Pandemic on School-Aged Children with Fragile X Syndrome

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.

21 09, 2022

Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives

By |2022-10-07T13:57:25-04:00Sep 21, 2022|Comments Off on Observable Symptoms of Anxiety in Individuals with Fragile X Syndrome: Parent and Caregiver Perspectives

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 [...]

20 07, 2020

Toilet Training in Fragile X Syndrome

By |2022-06-07T09:43:13-04:00Jul 20, 2020|Research Results|Comments Off on Toilet Training in Fragile X Syndrome

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.

6 05, 2020

Transition to Adult Services for Individuals with Fragile X Syndrome

By |2022-11-02T08:49:40-04:00May 6, 2020|Comments Off on Transition to Adult Services for Individuals with Fragile X Syndrome

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 [...]

6 03, 2020

The Family Reunion You Want to Go To

By |2021-12-09T11:21:16-05:00Mar 6, 2020|Community, International Fragile X Conference|Comments Off on The Family Reunion You Want to Go To

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.

22 10, 2018

Educational Recommendations for Students with Fragile X Syndrome: General

By |2022-08-26T16:14:41-04:00Oct 22, 2018|Comments Off on Educational Recommendations for Students with Fragile X Syndrome: General

Consensus of the Fragile X Clinical & Research Consortium Educational Recommendations for Students with Fragile X Syndrome: General Reading Time: 38 min.—|—Last Updated: Oct. 2018—|—First Published: Aug. 2012—|—Download PDF Note: There [...]

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