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Rare Disease Week on Capitol Hill

February 24 - 26, 2025

Rare Disease Week on Capitol Hill 2025 Agenda

Monday, February 24th
Pride in Rare Meetup (3:00 – 4:00 pm)
Location: Ronald Reagan Building and International Trade Center
1300 Pennsylvania Ave, NW, 2nd Floor, Pavilion, Washington DC, 20005
Event description
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Rare Reels Screening and Reception (5:00 – 8:00 pm)
Location: Ronald Reagan Building and International Trade Center
1300 Pennsylvania Ave, NW, 2nd Floor, Pavilion, Washington DC, 20005
Event description
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Note: the entrance closest to the Pavilion is on Pennsylvania Ave NW.  Use 1352 D St NW, Washington DC, 20004, as your destination if you are using a rideshare app like Uber or Lyft.  For more information on the building entrances and directions to the Pavilion room, click here.
Tuesday, February 25th

Legislative Conference (9:00 am – 5:00 pm) (See Full Agenda Here)

          Check-In & Breakfast (8:00 – 9:00 am)

Location: Ronald Reagan Building and International Trade Center

1300 Pennsylvania Ave, NW, Concourse Level, Atrium, Washington DC, 20005

Event description

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Young Adult Rare Representatives (YARR) Meetup (5:00 pm – 6:30 pm) – Advocates 16-30 years old only

Location: Ronald Reagan Building and International Trade Center

1300 Pennsylvania Ave, NW, Concourse Level, Ballroom B, Washington DC, 20005

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Note: the entrance closest to the Atrium on the Concourse Level is on 14th St NW.  Use 1300 Pennsylvania Ave NW, Washington DC, 20004 as your destination if you are using a rideshare app like Uber or Lyft.  For more information on the building entrances and directions to the Atrium, click here.

Wednesday, February 26th

Rare Disease Congressional Caucus Briefing (9:00 – 10:00 am)

       Check-In & Breakfast (8:30 – 9:00 am)

Location: Top of the Hill Banquet & Conference Center

1 Constitution Ave NE, Ballroom, Washington DC, 20002

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Meetings with Members of Congress

Location: Capitol Hill, Washington DC, 20004

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Group Photo on Capitol Steps (4:30 pm)

Location: Capitol Hill, Washington DC, 20004

The Senate Side facing the Supreme Court

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Rare Artist Reception (5:00 – 7:00 pm)

Location: Top of the Hill Banquet & Conference Center

1 Constitution Ave NE, Ballroom, Washington DC, 20002

Kendly-Jones

Questions?

Contact Kendly Jones, RDLA Program Manager kjones@everylifefoundation.org