Jump into July with Data, Genetics and Inspiration

JULY NEWSLETTER Rare University Genetic testing and gene therapy are everywhere. Take your understanding of genetics to the next level with the latest Rare University course, Genetics Concepts for Rare Disease Patients and Families. Data DIY Data governance is a critical issue in structuring collaboration agreements with researchers and platform providers. Join us in Washington, D.C. as we explore your rights, responsibilities and opportunities as data stewards. Can’t make it? Livestream it! RARE Patient Advocacy Summit Challenge your limits in the day one closing session led by strong, creative rare patient advocates and moderated by The Two Disabled Dudes. View the Summit Agenda Photo by: The Two Disabled Dudes Coming Up Join us July 9th for a RARE Webinar, Thyroid Eye Disease Awareness and Education to learn more about the disease and about potential treatment options. Register Last Chance to Catch the Tour You’ve got one more chance to attend RARE on the Road. Near the Sioux Falls area? Take your advocacy efforts to the next level. Register Community Spotlight: Cookies4Cures Brings Hope to Rare Disease Nine-year-old Dana Perella was determined to help find treatment for her friend diagnosed with Batten’s disease. By baking cookies, she’s funded research for the disease and garnered a RARE Champion of Hope Award. Meet Dana Mark the Calendar RARE on the Road July 13, 2019 Sioux Falls, SD Data DIY #2 July 17-19, 2019 Washington, D.C. RARE Patient Advocacy Summit September 18-20, 2019 San Diego, CA Know of an event we missed? Add it to the Events Hub!