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2018 FC Agenda

NNPDF Family Conference Agenda* 2018


Conference Registration will be on Thursday evening and Friday morning.

Activity Zone will be open Thursday evening, and during the morning and afternoon sessions on Friday and Saturday.

THURSDAY – August 2, 2018


  • Getting to Know You/First Time Attendee and Mentors
  • Welcome and Introduction
  • Celebration of Hope

FRIDAY – August 3, 2018


  • Welcome from the Board and Introduce Joslyn Crowe, NNPDF ED
  • International Patient Registry Update & How NNPDF is supporting in the U.S.
  • Disease Support – Group Break Outs
  • Drug Development from an Industry Perspective


  • Basics of Understanding Clinical Trials & Expanded Access
  • FDA Approved Clinical Trials Presentations & Panel with Q&A
  • Joslyn Crowe, ED – Meet and greet with families


  • On your own

SATURDAY – August 4, 2018


  • Research Presentations
  • Family Services – Presentation & Interactive Discussion


  • Supportive Therapies:  Presentation & Small Group Facilitated Discussions
  • Share your experience and knowledge with others – Group Break Outs


  • 2018 Family Conference Gala


*Conference subjects and topics subject to change

06/06/2018 jjb