NFXF Survey: What Aspects Have the Greatest Impact on Lives of People with FXS?

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The National Fragile X Foundation is conducting a short five-minute survey to find the aspects of Fragile X syndrome (FXS) that have the greatest impact on the lives of people with FXS and their families/caretakers. This could be the most important survey you’ll ever take!

What Will Be Done With This Information?

The information will be collected and analyzed by a team of FX professionals. A report will be written and be made available to pharmaceutical companies so they can use it when they go to the FDA with their proposed drugs and treatments. This will improve the design of clinical trials.

Who Should Take This Survey?

Anyone who has daily/near daily contact with someone with FXS should complete the survey.

For example, you may take this survey if you are related to a person with FXS or work regularly with someone with FXS. These are examples of the people who could complete the survey for your child: mom, dad, siblings, teacher, therapists. Self-advocates may also complete it themselves.

Please complete a survey for each individual with FXS.  The survey can be completed multiple times and each completed survey needs to be specific for each person with FXS.

We are gathering information on people with FXS of all ages.

Thank you in advance for your time!