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DIA 2018 Global Annual Meeting


A New Ecosystem: The Nature of Relationships Between Patient Advocacy Groups and Sponsors

    Session Chair(s)
      Kristin  Voorhees, MA

      Kristin Voorhees, MA

      • Senior Manager, Patient Advocacy
      • Ultragenyx Pharmaceutical, United States
    This interactive session will convene three distinct patient advocacy groups (PAGs) who will discuss how their unique business models are being used to build long-term relationships with sponsors. The session will also describe how PAGs resource, fund and execute interactions and collaborations with sponsors and discuss opportunities, challenges and solutions arising from the business side of patient engagement, such as maintaining independence, understanding potential conflicts of interest and ensuring transparency
    Learning Objective : • Learn approaches for outlining and codifying Patient Advocacy Organization (PAO)/Industry partnership activities to maximize respect and mutual benefit • Discuss training and skill-based preparation tools for fully harnessing the power of patient stories/insight • Share best practices for tracking and measuring impact of PAO/Industry partnership activities
    Speaker(s)
      Alice  Bast

      The Business of Patient Engagement

      Alice Bast

      • CEO
      • Beyond Celiac, United States
      Katie  Jensen, MPA

      Necessary Relationships: The Effect of Pharmaceutical Relationships on Rare Disease Patient Advocacy Organizations

      Katie Jensen, MPA

      • Development Director
      • The LAM Foundation, United States
      Suzanne  Schrandt, JD

      A Day in the Life: Making Patient Engagement Real

      Suzanne Schrandt, JD

      • Director, Patient Engagement
      • Arthritis Foundation, United States