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RARE Disease Week Agenda

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Rare Disease Week 2026 Legislative Conference

Monday, February 23, 2026:

FDA Rare Disease Day 2026

Tuesday, February 24, 2026:

Share Your Story Day

  • 2:00 p.m. – 6:00 p.m. – View Full Agenda
  • Ronald Reagan Building and International Trade Center
    1300 Pennsylvania Ave, NW
    Concourse Level, Atrium Hall
    Washington, DC 20004
  • Metro Stop: Metro Center and Federal Triangle

Welcome Reception

  • Ronald Reagan Building and International Trade Center
    1300 Pennsylvania Ave, NW
    Concourse Level, Atrium,
    Washington, DC 20004
  • Metro Stop: Metro Center and Federal Triangle

Community Meetups

  • Ronald Reagan Building and International Trade Center
    1300 Pennsylvania Ave, NW
    Concourse Level
    Washington, DC 20004
  • Metro Stop: Metro Center and Federal Triangle

Wednesday, February 25, 2026:

Legislative Conference

  • 9:00 a.m.-5:00 p.m. (Registration opens at 8:00 a.m.) View Full Agenda
  • Ronald Reagan Building and International Trade Center
    1300 Pennsylvania Ave, NW
    Concourse Level, Atrium Hall
    Washington, DC 20004
  • Metro Stop: Metro Center and Federal Triangle

RARE Artist Gallery

Thursday, February 26, 2026

Meetings with legislators will take place in their office between 9 am and 5 pm. Please join us for additional activities on the Hill today.

Senate Aging Committee Hearing Livestream & Breakfast

  • 8:30 a.m. – 12:00 p.m.
  • Dirksen Senate Office Building, Room G-11
    50 Constitution Ave NE, Washington, DC 20002

Senate Aging Committee Hearing (In person)

  • 9:30-11:30 am.
  • 120 Constitution Ave NE
    Hart Senate Office Building, SH-216
    Washington, DC 20510
    More information here

Hill Meetings with Members of Congress

  • 9:00 a.m. to 5:00 p.m. – Meetings are scheduled depending on office availability, schedules are sent out to advocates the week before.
    • Capitol Hill, Washington DC 20004
      Metro Stop: Union Station (Senate side) or Capitol South (House side)

Rare Disease Congressional Caucus Briefing

  • 12:30 p.m. – 2:00 p.m.
  • Cannon House Office Building, 390
    27 Independence Ave SE
    Washington DC 20003

Capitol Steps Group Photo

  • 4:30 p.m.
  • Capitol Hill, Washington D.C 20004 – East Steps
  • Metro Stop: Union Station (Senate side) or Capitol South (House side)

Closing Reception

  • 5:00 p.m. – 7:00 p.m.
  • Top of the Hill Banquet & Conference Center
    1 Constitution Ave NW
    5th Floor Ballroom
    Washington DC 20002

Friday, February 27, 2026:

Rare Disease Day at NIH

Exact times and locations of all events are subject to change.

Questions? Please email rarediseaseweek@rareadvocates.org