Data DIY – Developing Collaborative Research Networks

What is a collaborative research network approach and how can it help with patient organization-led data collection?

Join us in our Data DIY workshop #3 at The Notary Philadelphia Downtown, Autograph Collection, as we take a deep dive into this approach, focusing on:

» Attracting more doctors and researchers to your community

» Growing and managing crowdsourcing to accelerate data collection

» Exerting control over the destiny of your community’s research

You will hear from rare disease data experts including Dr. David Fajgenbaum, founder of Castleman Disease Collaborative Network (CDCN). Dr. Fajgenbaum will lay out his organization’s approach to disease research, providing a roadmap for other rare disease organizations wanting to avoid the pitfalls of traditional approaches.

Learn more about Dr. Fajgenbaum’s work before the workshop.

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.


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