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.
Presented by
Speakers
-
![Steve Clemons]()
Steve Clemons Washington Editor at Large The Atlantic @SCClemons -
![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
Agenda
- 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
/media/img/atlantic_live/events/2020/09/webheader_pvc/original.png)
/media/img/atlantic_live/events/2020/10/RJ_webheader/original.png)
/media/img/atlantic_live/events/2020/10/resilientfuture_ollie_/original.png)