Date: Feb. 24th – 28, 2020
Time: 10 – 3pm
Place: Washington DC Capital Hill
Make your voice be heard at Rare Disease Week on Capital Hill!
Join Kids Conquering Sickle Cell Disease Foundation in Washington, DC for Rare Disease Week on Capital Hill. We are joining the Every Life Foundation uniting with compassionate advocates embraced for a change.
Each year we look forward to advocating on Capital Hill during Rare Disease week on Capital Hill to:
- Network with advocates around the country to build partnerships and unite to strengthen our community of advocacy.
- Make a difference on Capital Hill to build relationships with members of Congress and staff meeting face to face with lawmakers and staff who shape our national healthcare policies.
- Become more informed on legislation currently under consideration by Congress, enhance effective advocacy techniques & better understand critical issues that affect your continued access to quality care.
Activities Scheduled:
Monday, February 24th: 9:00 am—5:00 pm: Rare Disease Day Public Meeting at FDA* Food and Drug Administration 10903 New Hampshire Ave, Building 31, The Great Room Conference Center, Silver Spring, MD 20993
Tuesday, February 25th: 1:00-2:00 pm: Rare Disease Congressional Caucus briefing and Group Photo Capitol Hill, Russell Senate Office Building, Room 325, Washington, DC Metro Stop: Capitol South (House side) or Union Station (Senate side)
Tuesday, February 25th: 5:30pm – 9:30pm: Cocktail Reception and Rare Disease Documentary Screening Ronald Reagan Building and International Trade Center Amphitheater, 1300 Pennsylvania Ave NW, Washington, DC 20004 Metro Stop: Federal Triangle
Wednesday, February 26th, 8:00am – 4:45pm: Legislative Conference Ronald Reagan Building and International Trade Center Atrium Ballroom, 1300 Pennsylvania Ave NW, Washington, DC 20004 Metro Stop: Federal Triangle
Wednesday, February 26th, 6:00pm: Young Adult Meetup Rare Hub 1012 14th Street NW, Suite 500, Washington, DC 20005 Metro Stop: McPherson Square
Thursday, February 27th, 7:00am – 8:30am: Lobby Day Breakfast Ronald Reagan Building and International Trade Center Atrium Ballroom, 1300 Pennsylvania Ave NW, Washington, DC 20004 Metro Stop: Federal Triangle
Thursday, February 27th, 9:00am – 5:00pm: Scheduled Meetings with Members of the House and Senate 10:00am – 5:00pm: Hospitality Room TBD U.S. Capitol Metro Stop: Union Station (Senate side) or Capitol South (House side)
Thursday, February 27th, 5:00pm – 7:00pm: Rare Artist Reception Capitol Hill, Hart Senate Office Building, Room 902, Washington, DC (Use “North” elevators) Metro Stop: Union Station (Senate side) or Capitol South (House side)
Friday, February 28th, 8:30am – 4:00pm: Rare Disease Day at the National Institutes of Health* National Institutes of Health 9000 Rockville Pike, Building 45, Main Auditorium, Natcher Conference Center, Bethesda, MD 20892 Metro Stop: Medical Center Station
All events require advance registration. For more information or to register, please visit http://rareadvocates.org/rdw/.
*Hosted by an outside organization and listed for informational purposes.
