Patients Count Leadership Council

FasterCures’ Patients Count Leadership Council is comprised of key opinion leaders in academic, patient advocacy, biotechnology, pharmaceutical, policy and other stakeholders who share an interest in improving health by expanding opportunities for patients’ perspectives to shape decision‐making at all levels of R&D.

With FasterCures staff, Leadership Council members will work collaboratively to:

  1. Identify and cultivate appropriate sources and uses of patient input to integrate across the full continuum of medical product discovery, development, regulation and delivery.
  2. Expand the capacity of patient‐based nonprofit organizations to meet opportunities and expectations to serve as repositories of rigorous patient data suitable to inform patient‐focused medical product development.
  3. Expand the capacity of academic‐based researchers in the social sciences, health economics, epidemiology, anthropology and related disciplines to perform research studies that illustrate patient preferences, priorities and perspectives across populations and subgroups through training and resource development.
  4. Share emerging practices with FDA and work collaboratively to address shared challenges.
  5. Develop, assess and advance policy proposals that foster patient‐centric resource allocation and decision‐making at the federal level.

The following organizations are members of the Patients Count Leadership Council; the organization’s representative on the Leadership Council is indicated in parentheses:

  • Alkermes (Nikki Levy, Vice President, Patient Engagement)
  • American Heart Association (Nancy Brown, CEO)
  • Amgen (Meredith Smith, Global Risk Management Officer, Global Patient Safety)
  • Arthritis Foundation (Suzanne Schrandt, Director, Patient Engagement)
  • Biogen (Kristin Van Goor, Director, Regulatory Policy; Jessica Riviere, Senior Director of Global Patient Advocacy)
  • Biotechnology Innovation Organization (Cartier Esham, Executive Vice President, Emerging Companies and Vice President, Science & Regulatory Affairs; Kay Holcombe, Senior Vice President, Science Policy)
  • Celgene (Joel Beetsch, Vice President, Patient Advocacy)
  • Chordoma Foundation (Josh Sommer, Executive Director)
  • Cystic Fibrosis Foundation (Mary Dwight, Senior Vice President for Policy & Patient Assistance Programs)
  • Depression and Bipolar Support Alliance (Phyllis Foxworth, Advocacy Vice President)
  • Helmsley Charitable Trust (Gina Agiostratidou, Program Director)
  • Lungevity Foundation (Andrea Stern Ferris, President and CEO)
  • Melanoma Research Alliance (Michael Kaplan, President and CEO)
  • Merck (Luther Clark, Global Director, Scientific Medical and Patient Perspective)
  • Michael J. Fox Foundation for Parkinson’s Research (Todd Sherer, CEO)
  • National Psoriasis Foundation (Leah McCormick Howard, Chief Operating Officer)
  • Pancreatic Cancer Action Network (Julie Fleshman, President and CEO)
  • Parent Project Muscular Dystrophy (Patricia Furlong, Founding President and CEO)
  • Pfizer (Roslyn Schneider, Lead, Global Patient Affairs)
  • Rett Syndrome Research Trust (Monica Coenraads, Executive Director)
  • Sanofi (Eric Racine, VP & Head, Public Affairs)
  • UCB (Kristi Lengyel, Director of Patient Advocacy)
  • Vascular Cures (Wendy Hitchcock, Vascular Cures)
  • Vertex (Danyel Henry, Senior Director, Government Affairs and Public Policy)

For more information about Patients Count Leadership Council opportunities, please contact Cynthia Grossman.