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

Part 1 of Global Genes’ new series Data DIY will help organizations understand the why’s, what’s and how’s of data collection for advocacy leaders looking to accelerate research for their communities. Join us in Irvine, California and online for the first workshop as experts from the field of data and life sciences and expert advocacy leaders walk you through the basics of data collection strategy, tactics and planning for your research collaborations. 

We’ll start with building our common understanding of key terms in research, data governance and the business models of different types of research platforms, expanding our knowledge of our rights as data owners and obligations as data stewards. We’ll then get into how to build a data strategy and tactical plan that best fits your needs.

Travel Scholarships:

Travel Scholarships are available 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.

Additional Event Information:

Thursday’s evening welcome reception will be May 2nd from 6:30 pm to 8:30 pm. Friday’s workshop will begin at 8:00 am.

Please use the link below to secure a room through the Global Genes room block.

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

Learn More About the Data DIY Program

From: 05/02/2019 - To: 05/03/2019

08:00 AM - 05:00 PM UTC-06:00

Irvine Marriott, 18000 Von Karman Avenue, Irvine, California 92612 USA

Parking Rates

Overnight Guests

Overnight Self-Parking – $32

Overnight Valet – $36


In and out privileges extended to overnight guests only.

Daily Self-Parking

0-30 minutes – complimentary

30 minutes – 2 hours – $26

2 hours – 24 hours – $32

Daily Valet

0-15 minutes – complimentary

15 minutes – 2 hours – $28

3 hours – 24 hours – $36