Data DIY - why, how, and what you need to know

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

We're proud to announce our newest Global Genes workbook and event series to inform and empower your journey through the health data landscape. Join us to kick the program off in Irvine, CA on May 3rd with Workshop #1, “The Why’s and How’s of Data Collection." Learn More What You'll Learn Advocacy leaders, patients and caregivers will get guidance and mentorship to make sure they come away with a deeper understanding of: The definitions of data and why data collection is important Data use for registries to support improved outcomes and standards of care Long-term planning for data collection - insights from advocacy leaders Case studies in advocacy groups using different types of data aggregation platforms Thanks to the generous support from the Chan Zuckerberg Initiative, this new capacity-building series is comprised of four core, progressive training modules on data and data strategy: The Why’s and How’s of Data Collection (May 3rd, Irvine, CA) Data Trusts and Governance (July 18th, Washington, DC) Data Sharing for Science Collaborations (Fall 2019, location coming soon) Developing Collaborative Research Networks (Winter 2019/2020, location coming soon) Register for Event #1 - The Why's and How's of Data Space is limited, so sign up early! All four workbooks and event days will be recorded for online consumption, but due to the incredibly generous speakers’ willingness to spend extra time providing personal mentorship and support to attendees, we encourage you to try to make it to the live events where possible. Travel scholarships are available to those who qualify.