Archive for July, 2016

NIH, here’s some of what we need from you

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)


the need for speed. (Speed delivery of treatment)