As patient communities and advocacy leaders become more deeply embedded in drug development, especially in rare diseases, it is imperative that organizations understand how patient engagement drives value beyond de-risking. Join Global Genes to hear insights on how patients are changing the landscape for the development of novel therapeutics and how researchers, drug developers and funders can better leverage patient-centric approaches to optimize value throughout development. Delve into how patient advocacy engagement and in drug development can act as a driver of investor value and learn how patient advocates are becoming market makers through their work in catalyzing scientific breakthroughs, data collection and sharing, reshaping clinical research, promoting access and building patient networks.

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All Rights Reserved. Forward ® 2020

EBD Group Inc., 3150 Pio Pico Drive, Suite 201, Carlsbad, CA, 92008

RARE Beyond the Square Partner Plus:

RARE Beyond the Square Partners:

  • Sara Jane Demy - CEO and Founder, Demy-Colton
  • Dave Greenwald – VP, Deerfield Management
  • Rich Horgan – Founder, Cure Rare Disease
  • Vijay Sappani – Founder and CEO, Ela Capital, CDG Canada
  • Walt Kowtoniuk – Partner, Third Rock

From de-risking to value creation

Leveraging platform approaches to gene therapies to accelerate therapeutic development for monogenic diseases

  • Allyson BerentV – CSO and COO, GeneTx Biotherapeutics
  • P.J. Brooks –  Program Director, NIH
  • Nicole Guadelli – Director and Head of Gene Editing Technologies, Beam Therapeutics  
  • Peter Marks – Director of Center for Biologics Evaluation and Research, U.S. Food and Drug Administration
  • Nick Leschly – Chief Bluebird, bluebird bio

Advancing patient-centered value frameworks for novel therapeutics in rare disease

  • Craig Martin – CEO, Global Genes
  • Diane Berry – Senior VP, Sarepta Therapeutics
  • Donna Cryer – President and CEO, Global Liver Institute
  • Jeremy Levin– CEO, Ovid Therapeutics