We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2019 in Washington, DC from February 24-28, 2019!
Registration for Rare Disease Week on Capitol Hill 2019 is OPEN!
Please view the events below and register for each separately. Attendance at the Legislative Conference on February 25th is required in order to attend the Lobby Day on February 26th. Please note that if you are bringing a spouse or caregiver, you must register each person for each event they plan to attend. If you are bring a child or children, please add them to your own registration where indicated.
The week includes the following events, all of which are free for patients, caregivers and other advocates. Please click the links to register for each event you will attend.
Sunday, February 24th, 5:30 – 9:30pm: Cocktail Reception and Rare Disease Documentary Screening at the Ronald Reagan Building.
Monday, February 25th, 8:00 am – 4:45 pm: Legislative Conference at the Ronald Reagan Building. Registration for the Legislative Conference and Lobby Day is combined. Every person participating in the Legislative Conference and Lobby Day will need to register for the event including young adults.
Tuesday, February 26th, 7:00 – 8:30 am: Lobby Day Breakfast at the Washington Court Hotel.
Tuesday, February 26th, 9:00 am – 5:00 pm: Scheduled Meetings with Members of the House and Senate on Capitol Hill. Hill schedules will be distributed at the Legislative Conference on Monday.
Tuesday, February 26th, 6:00 pm: Young Adults Meet-Up at the Rare Hub.
Wednesday, February 27th, 11:30 am – 1:00 pm: Rare Disease Congressional Caucus Briefing in the Dirksen Senate Office Building.
Wednesday, February 27th, 5:00 -7:00 pm: Rare Artist Reception in the Rayburn House Office Building.
Thursday, February 28th, 8:30 am – 4:00 pm: Rare Disease Day at NIH in Bethesda, MD. Register on the NIH website.
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. For convenience, a hotel room block has been reserved at the Washington Court Hotel for $229 per night from February 24 to February 28th. To make a reservation in the EveryLife Foundation hotel room block, please go the hotel website.
To find out about past Rare Disease Weeks on Capitol Hill, click the links to the right for archived materials and videos from our 2018 events.
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. Details to register for this webinar will be provided soon.
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.