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2017 Tentative Program


2017 NNPDF Family Conference

Tentative Program

Thursday Evening

  • Join us as we summarize the past year and explain how this conference is different
  • An opportunity for first-time attendees to meet and interact with others
  • A time for returning attendees to see friends and meet others
  • A Celebration of Life, remembering those we have lost


  • The importance of a unified community and central patient advocacy organization
  • How to lead Strong Patient Support and Advocacy Communities – Case Studies and Panel Discussion
  • Building a Therapeutic Pipeline and the role of a Central Patient Registry
  • Unbiased Clinical Perspectives in Rare Diseases – Case Studies and Panel Discussion
  • Disease specific breakout sessions
  • Industry best practices in patient advocacy and working with rare disease communities
  • Treatment options currently available from all the pharmaceutical companies:
      Sanofi Genzyme
      CTD Holdings


  • A discussion about where the Foundation has been and where it is going
  • Facilitated Break out Groups – your feedback about the Future Vision 
  • Why the International Registry is important for everyone
  • Research and FDA updates for both ASMD and NPC
  • Navigating the health care industry and obtaining supportive services
  • Identifying coping skills and how to take care of yourself
  • Separate sessions for moms, dads, siblings, dealing with grief, and first time attendees

Saturday Evening

  • Gala and Celebration of 25 years