In answer to the recent NIH Request For Information (RFI), several advocates and organizations submitted the attached response. Response to NIH June 2016
The response covers essentials such as:
- show us the money, (Quickly ramp up committed budget)
- give us access to research by bringing down the walls, (Address NIH Institute process and policy barriers)
- nothing about us without us, (Provide for meaningful engagement of experts and patients advocates)
- do it right, (Establish rigorous research standards)
and
the need for speed. (Speed delivery of treatment)
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