Accelerating the Conversation:
Rare Disease, the Patient Experience and What's Next

February 14, 2017
San Diego

The Atlantic convened experts for a discussion of the rare disease patient experience and why it is so unique. We probed these themes through conversations seeking to explore how genomics and other cutting-edge clinical innovations may transform the future of health care.

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Presented by

Atlantic Live


  • Steve Clemons
    Steve Clemons Washington Editor at Large The Atlantic
  • Hudson Freeze
    Hudson Freeze Director of the Human Genetics Project Sanford Burnham Prebys Medical Discovery Institute
  • Cara O'Neill
    Cara O'Neill Co-founder and Vice President Cure Sanfilippo Foundation
  • Diana Papworth
    Diana Papworth Mother of Children with CDG
  • Shaun Papworth
    Shaun Papworth CDG Patient
  • Elsa Shapiro
    Elsa Shapiro Professor of Pediatrics and Neurology, Division of Pediatric Behavioral Neuroscience University of Minnesota


  • Tuesday, February 14
  • 6:30 a.m.WelcomeJocelyn Miller, AtlanticLIVE
    Tolga Tanguler, President of North America, Pfizer Rare Disease
  • 6:40 a.m.Looking for a Cure: The Rare Disease Patient Experience and Lysosomal Storage DiseaseCara O’Neill, Co-founder and Vice President, Cure Sanfilippo Foundation
    Elsa Shapiro, Professor of Pediatrics and Neurology, Division of Pediatric Behavioral Neuroscience, University of Minnesota
    With Steve Clemons, Washington Editor at Large,The Atlantic
  • 7:05 a.m.When There's No Diagnosis: One Rare Disease Researcher's Hunt for AnswersHudson Freeze, Director of the Human Genetics Program, Sanford Burnham Prebys Medical Discovery Institute
    Diana Papworth, Mother of Children with CDG
    Shaun Papworth, CDG Patient
    With Steve Clemons, The Atlantic
  • 7:30 a.m.ClosingJocelyn Miller, AtlanticLIVE


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