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Conference on Clinical Research for Rare Diseases on November 3rd

July 12, 2016
BIO members may be interested in the upcoming Conference on Clinical Research for Rare Diseases, hosted by the Rare Diseases Clinical Research Network.  The Rare Diseases Clinical Research Network is an initiative of the Office of Rare Diseases Research, NCATS, funded through a collaboration between NCATS and the NIH.  The conference will be held on November 3, 2016 at the Washington Marriott Wardman Park.

There are more than 6,800 diseases classified as "rare" (defined as having a prevalence in the United States of <200,000 persons). While individually these entities are uncommon, as a group they are an important cause of chronic illness, disability and premature death in both children and adults. They take a disproportionate share of our health care dollars because of their complexity and the expense of, in most cases, inadequate therapy.

Despite their rarity, many fundamental advances in medicine have come from the study of rare diseases and these have benefited common diseases. As an example, the study of the human genome began with identification of rare diseases (muscular dystrophy being the first) and epigenetics was first identified in rare disorders. Both because of currently inadequate therapy and the potential to assist common as well as rare disorders, the conduct of clinical research in rare diseases is essential.

New investigators, trainees, junior faculty, and others interested in rare disease research methodology are encouraged to attend. Attendees will have the opportunity to present their work through submission of an abstract and inclusion of a poster session; investigators working on rare diseases will provide feedback and advice. Attendees will also have the opportunity to:

  • Meet key leaders in rare disease research.

  • Engage in formal and informal networking and idea generation with other trainees and investigators

  • Discuss career development and strategic planning for academic success.

  • Explore research collaborations.

To learn more and register for the conference, please visit