Data DIY – Developing Collaborative Research Networks

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.


The deadline to book a room through the room block has passed, however, you may still book a room at The Notary Philadelphia Downtown, Autograph Collection.


Travel Scholarships:

Travel Scholarships are available up to $750 and will be automatically provided to all individual patients or patient advocates in the rare disease community or staff of rare disease nonprofit organizations or support groups who not only register but attend the meeting. Travel scholarships are to be used for meeting-related expenses such as registration, travel, parking, mileage and hotel accommodations and will be mailed post-event. For more information, please contact

If you have any questions, please contact the events team.

From: 10/24/2019 - To: 10/25/2019

08:00 AM - 05:00 PM UTC-05:00

21 North Juniper Street, Philadelphia, Pennsylvania, United States of America