Share your thoughts on common terms describing the Fragile X Premutation
By Hilary Rosselot
Carrier, Premutation, Condition/Disorder…oh my!
What terms do you use to describe the Fragile X premutation? We want to hear from YOU!
The National Fragile X Foundation and the Fragile X Association of Australia are engaged in a global discussion about the terms used to describe various issues and problems that some who have a Fragile X premutation may experience. We want to understand your thoughts and feelings about these terms.
We need individuals who are Fragile X premutation carriers and others to complete this survey and share more about their thoughts and feelings regarding the various terms.
This survey will take less than 10 minutes to complete, and your responses will remain anonymous. We plan to share the results of this survey broadly with the Fragile X community.
Share your opinions by completing the survey here.
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The International Fragile X Premutation Registry: Building a Resource for Research and Clinical Trial Readiness
The first published publication from the International Fragile X Premutation Registry Advisory Committee. This International Fragile X Premutation Registry is an important first step and can serve as a useful tool for clinicians and researchers in the field.