Data DIY – Your Involvement in Driving Understanding, Discovery, and Treatments for Rare Disease

Part 2 of Global Genes’ new Data DIY series will build our common understanding of the rights we have as data owners and our responsibilities as data stewards. Led by experts in data collection collaboration agreements, you’ll learn how to develop a governance plan for your program that includes key elements, such as:

» defining program objectives

» identifying stakeholders

» building your team

» protecting participants’ privacy

» providing for informed consent

» determining how data is accessed

» ensuring sustainability over time


Learn More About the Data DIY Series

Additional Event Information:

Wednesday Evening Welcome Reception: Join fellow guests for a casual meet and greet. The evening welcome reception will be July 17th from 5:00 pm to 7:00 pm EST.

The workshop will be Thursday, July 18th, followed by office hours on Friday, July 19th, where attendees will be able to schedule one-on-one time with the experts.

The event will be held at the Washington Georgetown Marriott. Please use the link below to secure a room through our room block. The deadline to reserve a room through the Global Genes room block is June 26. 

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: 07/17/2019 - To: 07/19/2019

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

1221 22nd Street Northwest, Washington, District of Columbia, United States of America