Evolving Role of Patient Advocacy


Once a ‘nice-to-do,’ now a strategic imperative

Involving patients and their advocates in drug development was long seen as a “nice-to-do,” not a strategic necessity. That’s changing as drug makers embrace patient advocacy to fight rare diseases. As advocates become more sophisticated and better organized, investors and regulators increasingly seek —and even require —their participation in clinical research. In this paper, you’ll discover:

  • How activism on behalf of HIV/AIDS patients in the 1980s started a movement that permanently changed the course of clinical drug research
  • What new legislation such as the 21st Century Cures Act means for sponsors looking to involve patient advocates in clinical trials
  • How patient registries and natural history studies can help support your orphan drug regulatory submission