The NIH has extended the deadline to March 16, 2012.

The National Institutes of Health (NIH) has asked the National Fragile X Foundation to help organize feedback regarding the aims and future direction of the Research Plan for Fragile X Syndrome and Associated Disorders. Therefore, we are reaching out to basic and clinical researchers, clinicians and family members for their thoughts and feedback. We will then organize the written responses into a formal response.

The deadline for your response to our request in February 27, 2012 March 16, 2012.

There is power in numbers and power in organization. Your comments, which can be anonymous if you so choose, will be grouped with other’s similar comments as a way to emphasize key points.

A summary of the current plan’s goals and objectives:

The entire current plan:
NIH Research Plan on Fragile X and Associated Disorders 06-2009.pdf

The NIH is interested in creative, concrete suggestions in response to the following questions, for updating the long term research plan:


  • Please comment from your perspective on the current status of progress towards the accomplishment of the goals and objectives of the NIH Research Plan on Fragile X Syndrome and Associated Disorders as it relates to (FXS, FXPOI, and/or FXTAS).
  • What research advances highlight progress in general or toward meeting specific goals or objectives? What goals or objectives in the 2008 plan have shown less progress?


Each of the objectives was considered important in 2008, but we recognize that the field is constantly advancing. Therefore, it is important to periodically reassess and prioritize the needs and opportunities for Fragile X research.

  • Please comment on the relative priorities of the current goals and objectives in the NIH Research Plan on Fragile X Syndrome and Associated Disorders as they relate to (FXS, FXPOI, and/or FXTAS).

New Areas

  • Please suggest new areas for research in (FXS, FXPOI, FXTAS) that may have emerged since the NIH Research Plan on Fragile X Syndrome and Associated Disorders plan was developed.

Your Feedback

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We realize that some of you might prefer to respond directly to the NIH. If so, here is the information on how to do so: