Rare Disease Week on Capitol Hill 2020
February 25 - February 28
Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.
Registration for Rare Disease Week on Capitol Hill 2020 will open in January 2020.
Tentative Schedule of Events
The week includes the following events, all of which are free for patients, caregivers and other advocates.
Tuesday, February 25th: Rare Disease Congressional Caucus briefing
Tuesday, February 25th: Cocktail Reception and Rare Disease Documentary Screening
Wednesday, February 26th, 8:00 am – 4:45 pm: Legislative Conference at the Ronald Reagan Building.
Thursday, February 27th: Lobby Day Breakfast
Thursday, February 27th, 9:00 am – 5:00 pm: Scheduled Meetings with Members of the House and Senate on Capitol Hill
Thursday, February 27th: Rare Artist Reception
Friday, February 28th: Rare Disease Day at NIH in Bethesda, MD
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.
Attendees need to make their own travel arrangements including hotel reservations.