Registration Now Open for Rare Disease Week on Capitol Hill 2020

You are invited to join more than 800 advocates for Rare Disease Week on Capitol Hill 2020 from February 25th to 28th. Registration is now OPEN for all the events during this exciting and powerful week in Washington, DC. 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. 

Please view the events below and register! Attendance at the Legislative Conference on February 26th is required in order to attend the Hill Day on February 27th. 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 bringing a child or children, please add them to your own registration where indicated.

Rare Disease Week on Capitol Hill includes the following events, all of which are free for patients, caregivers and other advocates.

  • Monday, February 24th: Rare Disease Day Public Meeting at FDA in Silver Spring, MD. Look out for more information on registration from FDA.
  • Tuesday, February 25th, 12:30-1:30 pm: Rare Disease Caucus Briefing, Russell Senate Office Building, Room 325.
  • Tuesday, February 25th, 5:30 – 9:30 pm: Cocktail Reception and Rare Disease Documentary Screening at the Ronald Reagan Building.
  • Wednesday, February 26th, 8:00 am – 4:45 pm: Legislative Conference at the Ronald Reagan Building. Every person participating in the Legislative Conference and Hill Day will need to register for the event including young adults.
  • Wednesday, February 26th, 6:00 pm: Young Adults Meet-Up at the Rare Hub.
  • Thursday, February 27th, 7:00 – 8:30 am: Hill Day Breakfast at the Ronald Reagan Building.
  • Thursday, February 27th, 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.
  • Thursday, February 27th, 5:00 -7:00 pm: Rare Artist Reception in the Hart Senate Office Building, Room 902.
  • Friday, February 28th, 8:30 am – 4:00 pm: Rare Disease Day at NIH in Bethesda, MD. Register on the NIH website.

Attendees need to make their own travel arrangements including hotel reservations. For convenience, there is a courtesy hotel room block at the Washington Plaza Hotel for $199 per night plus taxes. To book a room with the EveryLife Foundation for Rare Diseases room block, please visit the hotel website. We encourage you to watch our webinar to learn more about traveling to Rare Disease Week on Capitol Hill.

To help you prepare for Rare Disease Week on Capitol Hill, we suggest you join us for a free webinar on February 13th at 1 pm EST/10 am PST. You will learn helpful tips such as what to wear and what to bring for each event, and where to find additional resources.

Also, we invite you to watch this previously recorded webinar that provides you with an introduction and overview of the events during Rare Disease Week on Capitol Hill.