Registration Open for Data DIY #2: Data Trusts, Governance and Platforms

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

Join Global Genes, your advocacy peers and leading experts for personalized mentorship at our second workshop of the Data DIY series in Washington, D.C. from July 17th to the 19th, “Data Trusts, Governance and Collection Platforms". Learn More What You'll Learn: Defining specific objectives for your research program Identifying key stakeholders and building your collaboration team Ethics: participant privacy and providing for informed consent Ensuring research sustainability over time Exploring the landscape of platform providers vying for your business Data DIY #2 - Register Now