To encourage more collaboration and more efficient use of resources and build on the initiatives and recommendations discussed in this report, the committee proposes the creation of a time-limited task force on accelerating rare diseases research and product development. Because mobilizing such a task force might be difficult in the private sector and because high-level backing is crucial, the responsibility for creating the task force should rest with the Secretary of Health and Human Services. This task force, which might operate for 4 to 8 years, would bring together leaders in rare diseases research and product development from government, industry, academic and other research institutions, and advocacy groups and would involve international entities as appropriate.
RECOMMENDATION 8-1: The Secretary of Health and Human Services should establish a national task force on accelerating rare diseases research and product development. The objectives of the task force would be to promote, coordinate, monitor, and assess the implementation of NIH, FDA, and other public- and private-sector initiatives on rare diseases and orphan products and to support additional opportunities for public-private collaboration.
A task force on rare diseases research and product development will not lessen the need for all participants to improve their individual efforts and relationships as outlined in this report. Individual improvement will strengthen the foundation for collaboration.