The Everylife Foundation is excited to announce these upcoming three events in Washington, DC. All of the events are free, but space is limited and advance registration is required for each.
Rare Disease Congressional Caucus: Tuesday, November 15th, at 12-1pm ET
The final Caucus briefing of the year will focus on reauthorization of the Prescription Drug User Fee Act (PDUFA), the agreement between the biopharmaceutical industry and Food and Drug Administration (FDA) regarding user fees paid by industry to supplement federal appropriations for human drug review. Congress will need to reauthorize PDUFA before the current agreement expires at the end of September 2017, which will be an opportunity to include provisions to encourage the development and streamline the review of treatments for rare disease. You can register here for the briefing in room B-318 of the Rayburn House Office Building. Lunch will be provided.
Community Congress Annual Meeting: Wednesday, November 16th, at 8:30am-2:30pm ET
Get the inside track on EveryLife’s legislative initiatives and learn about the activities of the Community Congress working groups, including next steps on enhancing and expanding newborn screening nationwide and proposed webinars on Navigating the FDA. We are thrilled to announce a keynote by Dr. Phil Reilly, a Venture Partner at Third Rock Ventures and author of Orphan: The Quest to Save Children with Rare Genetic Disorders. A networking lunch is also included in the meeting, which will be held at the American Association for the Advancement of Science at 1200 New York Avenue NW. The agenda and registration are available here.
Fifth Annual RareVoice Awards: Wednesday, November 16th, at 6-10pm ET
Join us to celebrate rare disease advocates making a difference at the state and federal levels. EveryLife will also honor Congressional staff who ensure that rare disease patients have a voice on Capitol Hill and state legislators who are championing key initiatives. Senator Orrin Hatch will receive a Lifetime Achievement Award and Representative Joseph Crowley will be honored with a Congressional Leadership Award. Space is limited for this popular event, so register today. We look forward to seeing you at at the Arena Stage at the Mead Center for American Theater at 1101 Sixth Street SW.