October 14th-17th, 2018 - Washington, DC - National Organization of Rare Disorders Summit.


Executive Director, Vanessa Vogel-Falrley, was asked to present on the use of social media in fundraising at the NORD Members-Only Pre-Conference Meeting. The focus of this pre-summit meeting was to network with other organizations and share ideas as well as get updated on NORD activities and offerings to its members including Advancing Research & Innovation, Managing Patient Registries, Good Governance & Board Mgmt., Patient Assistance Programs. Recruiting & Managing a Medical A.B., Working w/ NORD to Educate About Your Disease, State Advocacy, Federal Policy, Uniting Your Disease: Splinter Groups & Factions and Volunteer Management & Grassroots Advocacy. 


Main Meeting: During the 2018 NORD Rare Summit, over 800 leaders from FDA, NIH, industry, patient groups, payers and research institutions addressed the New Era of Patient-Focused Innovation. Together, NORD Rare Summit attendees explored the new and innovative ways in which patients and caregivers are helping drive progress for the rare disease community.