• Kate Avery, MPH, Director of Research and Patient Engagement, Beyond Celiac
  • John Boyle, MA, (and Lynn Albizo), President & CEO, Immune Deficiency Foundation
  • Nicholas Brooke, Founder & Executive Director, Patient Focused Medicines Development
  • Barbara Collura, President & Chief Executive Officer, RESOLVE: The National Infertility Association
  • Louisa M. Daniels, JD, MBA, Vice President & Assistant General Counsel, Chief Counsel, Global Product Development, Pfizer
  • Tracy Hart, Chief Executive Officer, Osteogenesis Imperfecta Foundation
  • Ellen Ivey, National Advocacy Policy Director, Strategic Customer Group, Oncology, Solid Tumor, Johnson & Johnson & Katherine Capperella, Global Patient Engagement Leader, Janssen Pharmaceuticals, Johnson & Johnson
  • Jan Nissen, MBA, Vice President, Patient Innovation & Engagement, Merck
  • Amber Spierer, MPH, Executive Director, Patient Advocacy and Strategic Alliances, Advocacy and Access, Novartis
  • Louise Vetter, President & Chief Executive Officer, Huntington’s Disease Society of America
  • Rebekah Angove, PhD, Vice President, Evaluation & Patient Experience, Patient Advocate Foundation
  • Julie Eller, Director, Patient Centered Strategies, Arthritis Foundation
  • Jason Harris, Director, Public Policy, Lupus Foundation of America
  • Chris Healey, JD,President, Grifols Shared Services North America, & Vice President, Public Affairs, Grifols
  • Nancy Law, Chief Executive Officer, Myasthenia Gravis Foundation of America
  • Kristi Lengyel, MBA, Director of Patient Advocacy, & Global Healthcare System Strategy Lead Bone Mission, UCB & Courtney George, Compliance Manager, UCB, Inc.
  • Christeen Moburg, Senior Director, Patient Advocacy, Sangamo
  • Karen M. Morales, Associate Director of Engagement, The PATIENTS Program, PHSR, University of Maryland School of Pharmacy
  • Susan Stone, MBA, Associate Vice President, Alliance Advocacy & Patient Affairs; Board Member, The Allergan Foundation; Trustee, Allergan International Foundation
  • Keri Yale, MBA, Director of Patient Advocacy and Professional Relations, External Affairs, Boehringer-Ingelheim Pharmaceuticals

Read about the project objectives here.

Acknowledgement: Special thanks to members of our Steering and Review Committees, our sponsors. We also thank Ankura and Faegre Drinker Biddle & Reath, LLP who assisted us during this project.

Sponsors include Allergan, Biogen, Boehringer Ingelheim, Celgene, Grifols, Patient Focused Medicines Development, Sangamo, Servier, UCB, Merck, Novartis, Johnson & Johnson, Pfizer, People-Centered Research Foundation