Collecting useful data is an important first step.  But it’s equally important to ensure that your data is used. Join us at The Notary Philadelphia Downtown, Autograph Collection, to learn how a collaborative research network can help you:

  • Generate interest among clinicians and researchers
  • Grow and manage your scientific network
  • Exert control over the destiny of your community’s research

Hear Dr. David Fajgenbaum, founder of Castleman’s Disease Collaborative Network (CDCN), outline his eight-step approach to advancing patient-centric research. You’ll also learn from a panel of researchers, clinicians and advocates on how to attract interest and communicate around outcomes.


Special Pre-Workshop Event: Collaboration Insights and Live Q&A with Parent Project Muscular Dystrophy (PPMD)

Thursday, October 24, 3 PM to 5 PM

Ryan Fischer, Senior Vice President, Community Engagement

Eric Camino, PhD, Director, Research & Clinical Innovation

For decades, PPMD has been breaking new ground using data-driven insights to give patients and caregivers a voice in treatment development. In this special two-hour session, PPMD’s inspiring leaders will share the strategies they’ve evolved to progress from having one company interested in clinical trials to having more than 30 candidates in the pipeline and two approved therapies. Bring your questions to our round table discussion with PPMD leaders – and your peers – or submit them in advance through our conference app.


Missed Data DIY workshops #1 and #2? View them here.


To stay at The Notary Philadelphia Downtown, Autograph Collection, please book through the room block. The deadline to book a room through the room block is Thursday, October 10.