Changing the Rare Disease Landscape this Summer

JUNE NEWSLETTER Dash for Rare Thank you, runners, volunteers and those who cheered us from afar at the 2019 OC Marathon. We were moved by Laura King Edwards who inspired us all as she ran in her sister’s memory. Have your own community event coming up? Let us know by adding it to the Events Hub. RARE Patient Advocacy Summit Community, collaboration, commitment to changing the world of rare disease. Don’t miss a second of the 2019 RARE Patient Advocacy Summit. Register Data DIY Governance Event: 1-to-1 Mentorship and Travel Scholarships Building and managing a patient registry is one of the best ways to help drive research for your disease community. How you’ll manage your registry, who’ll have access to it, and choosing the right services and platforms to do so require you to know the rules of the road. And that takes expert, personalized guidance. Join us July 18th and 19th to learn what is required today and the future of patient registries, including closed-door, 1-to-1 mentorship with data governance experts for organizations to help ensure you make the right choices for your community. Scholarships for lodging and travel are available, so register today! 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 Coming Up Precision Medicine is an emerging approach for disease treatment. Hear from medical professionals and learn the basics of precision medicine at our upcoming webinar. Learn More Community Spotlight The Rare Compassion Project changes the way healthcare professionals view rare disease. Kristin Hunt learned first hand the unique needs of caring for rare disease patients through participating in the family matching program. Read More Mark the Calendar RARE Drug Development Symposium  June 7, 2019 Philadelphia, PA 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!