The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
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Down Syndrome Research Plan Request for Information Opportunity

Opportunity to Provide Input on National Down Syndrome Research Plan

The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and the Trans-NIH Down Syndrome Working Group at the National Institutes of Health (NIH) are beginning the process of revising and updating the 2007 National Institutes of Health Research Plan on Down Syndrome. As a first step, NIH has asked the Down syndrome advocacy and research community to weigh in on the effectiveness of the Plan, its accomplishments, and its remaining gaps, and welcomes suggestions concerning new future research objectives through a Request for Information (RFI). NDSS is encouraging affiliate organizations and advocates to provide feedback and input on the RFI.

Down Syndrome Feedback & Information Needed

NIH is looking for responses on the following topic areas from the Down syndrome affiliate and advocacy community on the revised plan:

  • What research studies and areas would be the most helpful to individuals with Down syndrome and their families?
  • What are new or persistent gaps in the present Down syndrome research plan?
  • What are new opportunities for research on Down syndrome that are not covered or missing in the current plan?
  • What research has been particularly helpful and successful for individuals with Down syndrome and their families?
  • What are the Down syndrome research objectives that should be considered a higher or lower to expedite research for individuals with Down syndrome and their families?
  • Has the current research plan helped in the Down syndrome community and in the Down syndrome research field?

How to Submit a Response

Comments are due by October 17th, 2012. All responses must be submitted via email to, and include in the subject line the RFI number, "NOT-HD-12-026." Please be sure to include your complete contact information with your response. All submissions will be considered in revising the Research Plan. All responses will not be considered confidential.

NDSS commends NICHD for its efforts and leadership to advance research in the areas of Down syndrome. Please feel free to contact me with any questions regarding the NIH Down Syndrome Research Plan on Down Syndrome RFI opportunity.

For more information, please contact NDSS VP of Advocacy & Affiliate Relations Sara Hart Weir at

External Resources

  • Buddy Walk
  • NDSS Yourway
  • My Great Story
  • NDSS DS-Ambassadors