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IOM Releases Report on Rare Diseases

The Institute of Medicine (IOM) has released a consensus report calling for an integrated national strategy to promote rare disease research and product development.  The study, Rare Diseases and Orphan Products: Accelerating Research and Development, was done at the request of the National Institutes of Health (NIH) and the Food and Drug Administration in order to examine the opportunities and obstacles in developing drugs and medical devices. 

This report contains several recommendations ranging from improving regulatory framework for orphan drugs and devices, to gaining a better understanding of insurance programs' influence on the development and use of such drugs and devices.  Two of the more notable recommendations are the creation of an NIH action plan and a Department of Health and Human Services (HHS) task force. The report calls for a comprehensive action plan for rare diseases research that covers all institutes and centers in regard to program planning, grant review, training and coordination of research.  Similarly, it also calls on the HHS Secretary to establish a national task force on accelerating rare disease research and product development.  The task force would assemble leaders from government, industry, academic institutions, and advocacy groups, such as NHF. 

The IOM is a Washington-DC based organization of the National Academy of Sciences. It provides advice to policy makers, healthcare professionals and the private and public sectors.

Click here for a copy of the report.


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