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DIA 2018 Global Annual Meeting

The DIA 2018 Global Annual Meeting brings together thousands of innovators from around the globe.

Beyond Adult Patients, Untapped Advisors in Clinical Development: Adolescents, Parents, Siblings, and Spouses

    Session Chair(s)
      Jennifer  Helfer, PhD, MA

      Jennifer Helfer, PhD, MA

      • Patient Advocacy
      • bluebird bio, Inc., United States
    As organizations involve patients, caregivers, and other untapped advisors in the design of clinical trials, questions exist about how best to incorporate the perspectives of these audiences and validate their contributions. Panelists will discuss how organizations are integrating these advisors in drug development.
    Learning Objective : To describe the advantages but practical difficulties in involving children and young people (CYP) in drug development. To define how eYPAGnet is providing a single point of contact to a consortium of YPAGs enabling sponsors to engage with CYP in an ethically acceptable and productive framework. To share best practices of YPAG members of the network involved in projects around Europe.
      C. Grace Whiting, JD

      2017-2018 National Rare Diseases Caregiver Survey Findings

      C. Grace Whiting, JD

      • President and Chief Executive Officer
      • National Alliance for Caregiving, United States
      Begonya  Nafria Escalera, MEd

      Establishing a European Network of Young Persons Advisory Groups to Increase the Involvement in Pediatric Clinical Research

      Begonya Nafria Escalera, MEd

      • Patient Advocacy - Coordinator
      • Fundacio Sant Joan De Déu, Spain
      Ann M Moravick

      What's Love Got to Do with It? Illuminating the Caregiver Treatment Journey

      Ann M Moravick

      • President
      • Rx4good, United States