Director’s Council of Public Representatives (COPR)
NIH Public Bulletin – September 2010
Conference on Clinical Research for Rare Diseases
When: September 21, 2010
Where: Bethesda North Marriott, Bethesda, MD
Institute: National Center for Research Resources (NCRR)
In the United States, more than 6,000 diseases are classified as "rare," or having a prevalence of fewer than 200,000 persons. Although individually these diseases are uncommon, as a group they are an important cause of chronic illness, disability, and premature death in both children and adults. Clinical research in rare diseases presents a number of unusual challenges and issues.
In September, you can learn more about rare disease research at the Conference on Clinical Research for Rare Diseases. Expert clinical investigators and members of NIH and industry will discuss topics including study design for small sample sizes, working with patient advocacy groups, and career development in rare disease research. The conference will culminate with a dinner keynote address by John Crowley, whose story was featured in the film Extraordinary Measures.
The conference is sponsored by the Rare Diseases Clinical Research Network, the Clinical and Translational Science Awards program, and other partners.
You can learn more or register for the Conference on Clinical Research for Rare Diseases at http://rarediseasesnetwork.epi.usf.edu/conference. The registration fee is $100 and includes meeting materials and all meals and refreshments.