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Livre Blanc
Operational Challenges
Understanding and navigating the evolving challenges affecting patient data initiatives
Apr 14, 2023
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Our 2021 Patient Advocacy Summit focused on helping nonprofit organizations support patients through advocacy-led research and data Initiatives.

One session with a panel of experts from a diverse set of patient organizations shared their experiences and learnings related to operational challenges such as addressing those affecting patient data initiatives and how they are evolving over time as patients gain increasing control of their own health data.

Other challenges discussed included:

  • Technology
  • Regulations
  • Partnerships
  • Sustainability

Download this whitepaper to learn more.


Participants

Angela Dobes, MPH, Vice President, IBD Plexus, Crohn's and Colitis Foundation

Kaylan Moitoso, Chief Business Officer, Parent Project Muscular Dystrophy

Steven Ringel, Vice President & General Manager, Rare Disease,
Sema4 | Inherited Retinal Disease Patient & Advocate | Co-Chair, Strategic Council, Foundation Fighting Blindness

Maria Vassileva, PhD, Senior Vice President, Science Strategy, Arthritis Foundation

David Voccola, Senior Director, Global Strategy, IQVIA Integrated Health Practice

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