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How NORD Helps Researchers

It is part of NORD’s mission to assist the dedicated researchers seeking to improve the lives of people with rare diseases.  Some of the ways we do so include the following:

  • NORD posts information about opportunities to participate in clinical trials on its website, in its Rare Disease Database, and in its eNews.  This service is free for government and academic researchers.  There is a small fee for industry.
  • In its publications and presentations, NORD seeks to enhance patient/family understanding of research and what it means to participate in clinical studies.  This is done so that individuals who decide to take part in research will understand how the process works and be better able to participate as informed partners with the research team.
  • NORD provides advocacy on behalf of funding for NIH research programs and, specifically, those related to rare diseases.  It also provides advocacy on behalf of funding for the FDA Orphan Products Development grants program.
  • Through its Corporate Council, NORD provides a neutral forum in which industry representatives may discuss and share information on topics of common interest related to the development of orphan products

 
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