Rare Disease Week

Rare Disease Week on Capitol Hill 2021

Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

No prior experience necessary. Registration for this event and all RDLA events are free for rare disease advocates.

July 14 – July 22, 2021
(Registration is open from April 21 to June 18th)

Please note that you will be prompted to select which events from the agenda below you would like to attend once you reach the checkout page. 
Week 1: 
Rare Disease Congressional Caucus Briefing: July 14th, 1:00pm-2:00pm ET.
Rare Disease Documentary Screening: July 14th, 5:45pm-8:15pm ET
  • 5:45-6:15pm ET: Documentary Welcome Reception
  • 6:15-7:30pm ET: Documentary Screening
  • 7:30-8:15pm ET: Documentary Panel
Legislative Conference Day 1: July 15th, 1:00pm-5:00pm ET
  • 1:00pm ET: Session 1
  • 2:00pm ET: Session 2
  • 3:00pm ET: Session 3
  • 4:00pm ET: Networking Happy Hour
Rare Artist Gallery Opens: July 15th, 5:00pm ET
Legislative Conference Day 2: July 16th, 1:00pm-5:00pm ET
  • 1:00pm ET: Networking Brunch
  • 2:00pm ET: Session 1
  • 3:00pm ET: Session 2
  • 4:00pm ET: Session 3
YARR Leadership Academy Graduation: July 16th, 5:15-6:00pm ET
  • Meet the first graduating class of the YARR Leadership Academy. YARR (Young Adult Representatives of RDLA) is a highly motivated group of 16-30 years-olds who are building the next generation of rare disease advocates.
YARR Meetup: July 16th, 6:00pm-7:00pm ET
  • This event is for young adult advocates, ages 16-30. If you are eligible and would like to attend, you can register here.
Week 2: 
Virtual Meetings with Representatives: July 20th, 12:00pm-5:00pm ET
Virtual Meetings with Senators: July 21st, 12:00pm-5:00pm ET
Diversity Caucus Roundtables: July 22nd
*Agenda times are subject to change
The first 600 registrants who participate in Rare Disease Week 2021 will receive a physical thank you package, mailed out after the event. 



Jul 14 - 22 2021


All Day

Additional Information