Thank you to the hundreds of rare disease advocates, caregivers, family members, friends, and industry who attended events in Washington, DC during Rare Disease Week on Capitol Hill 2019. Read more about this powerful week here.
We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2020 in Washington, DC from February 25-28, 2020!
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.
To find out about past Rare Disease Weeks on Capitol Hill, click the links to the right.
We encourage you to watch our webinar to learn more about traveling to Rare Disease Week on Capitol Hill. The next webinar to help prepare advocates for Rare Disease Week on Capitol Hill will be on February 14th at 12 pm EST.
If you’re just finding out about Rare Disease Week and RDLA, sign up for our email list and follow our Twitter and Facebook accounts for the latest information.