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

Register now for workshop #3: Developing Collaborative Research Networks.

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:

  1. The Why’s and How’s of Data Collection (May 3, 2019, Irvine, CA)
  2. Data Trusts and Governance (July 18, 2019, Washington, D.C.)
  3. Developing Collaborative Research Networks (October 24-25, 2019, Philadelphia, PA)
  4. Data Sharing for Science, Advocacy and Better Care (February 2020, Houston, TX)

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. 

Part 1

Part 1 of Global Genes’ new series Data DIY helps organizations understand the why’s, what’s and how’s of data collection for advocacy leaders looking to accelerate research for their communities. Build a common understanding of key terms in research, data governance and the business models of different types of research platforms, expanding your knowledge of your rights as data owners and obligations as data stewards. Download Presentation Slides

Watch Workshop #1

To download workbook #1: The Why’s and How’s of Data Collection, please provide your information below.

Part 2

Part 2 of Global Genes’ Data DIY builds a common understanding of the rights we have as data owners and our responsibilities as data stewards. Led by experts in data collection collaboration agreements, learn how to develop a governance plan for your program that includes key elements such as, defining objectives, identifying stakeholders, building a team and providing informed consent. Download Presentation Slides

Watch Workshop #2

To download workbook #2: Data Trusts, Governance and Collection Platforms, please provide your information below.

Travel Scholarships: Travel Scholarships for the workshops 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