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

Data DIY is a new Global Genes program comprised of a series of workbooks and companion in-person workshops that will prepare you to engage the health data landscape, no matter where you and/or your organization are on your learning curve.

We are living in the most hopeful, rapidly evolving time in medical history. Patients, caregivers and partners, clinicians and researchers are collaborating to accelerate results in large part because of the incredible wealth of and access to health data that’s allowing them to do more, faster. The challenge for patient advocates and organization leaders now is to be as technically savvy about data as the rest of these passionate stakeholders. 

Knowledge is power, and we want you to be empowered data owners and stewards. Join us on May 3rd to kick the series off in Irvine, California (or online) with Part 1: The Why’s and How’s of Data Collection to get your data strategy moving.

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.