Rare disease advocates from across the country are collaborating, advocating, and amplifying the voices of the 30 Million+ Americans suffering from rare diseases to Rare Disease Week on Capitol Hill 2019 in Washington, DC from February 24-28, 2019! Cure AHC is sending our VP Tony Pena & Director Leigh Mack, MD to this all-important week. Cure AHC has had representation since our founding in 2013. In fact, it is this ongoing effort that helped open doors at the NIH, which led to the AAV Gene Therapy Project Cure AHC is spearheading! A special kudos to Board Member Simon Frost, who attended last year but was unable to this year, yet meets regularly with NIH on our project.
Schedule of Events
The week includes the following events, all of which are free for patients, caregivers and other advocates.
Sunday, February 24th, 5:30 – 9:30pm: Cocktail Reception and Rare Disease Documentary Screening at the Ronald Reagan Building.
Monday, February 25th, 8:00 am – 4:45 pm: Legislative Conference at the Ronald Reagan Building. Registration for the Legislative Conference and Lobby Day is combined.
Tuesday, February 26th, 7:00 – 8:30 am: Lobby Day Breakfast at the Washington Court Hotel.
Tuesday, February 26th, 9:00 am – 5:00 pm: Scheduled Meetings with Members of the House and Senate on Capitol Hill. Hill schedules will be distributed at the Legislative Conference on Monday.
Tuesday, February 26th, 5:00 pm – 7:30 pm: Research America! Rare Diseases: Perspectives on Progress panel discussion and reception. Register online.
Tuesday, February 26th, 6:00 pm: Young Adults Meet-Up at the Rare Hub.
Wednesday, February 27th, 2:00-3:00 pm: Rare Disease Congressional Caucus Briefing in the Russell Senate Office Building, Room 325.
Wednesday, February 27th, 5:00 -7:00 pm: Rare Artist Reception in the Rayburn House Office Building.
Thursday, February 28th, 8:30 am – 4:00 pm: Rare Disease Day at NIH in Bethesda, MD. Register on the NIH website.
The Rare Disease Week on Capitol Hill Legislative Conference and Lobby Day is an event established for patients and caregivers, patient advocates, and patient advocacy organizations. While representatives from industry are invited to attend the Legislative Conference, the lobby day is for patients and caregivers, patients advocates, and patient advocacy organizations only.