You are invited to join Rare Disease Legislative Advocates (RDLA) and more than 200 rare disease advocates in Washington, DC for the 4th annual Rare Disease Week on Capitol Hill, February 23 – 27, 2015.  Rare Disease Week on Capitol Hill includes the following events:

  • Monday, Feb. 23 - "Rare" Documentary Screening and Cocktail Reception
  • Tuesday, Feb. 24 - Legislative Conference
  • Wednesday, Feb. 25 - Lobby Day
  • Thursday, Feb. 26 - Rare Disease Legislative Caucus Briefing
  • Thursday, Feb. 26 - RareArtist Reception
  • Friday, Feb. 27 - Rare Disease Day at the NIH (separate registration required)

The Legislative Conference will provide the latest updates on 21st Century Cures Initiative and an opportunity to improve your advocacy skills. During Lobby Day, advocates will meet with their Members of Congress and Congressional Staff to share their stories. 

The deadline to register is February 3rd. There is no cost for patient advocates to attend, click below to register:


There are still travel scholarships available to advocates from the following states: Alaska, Arizona, Arkansas, Colorado, Delaware, Hawaii, Idaho, Iowa, Kansas, Kentucky, Maine, Mississippi, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Mexico, North Dakota, South Carolina, South Dakota, Utah, Vermont, West Virginia, and Wyoming.  Click here to apply for a travel stipend.

If you are unable to join us in Washington DC, but want to make sure Congress hears your story, we are collecting patient stories that fellow patient advocates will hand deliver to your Members of Congress. Please click here to ensure Congress knows what issues are most important to you!  

Hotel Room Block: Dupont Circle, on the Red Metro line:
Embassy Row Hotel, 2015 Massachusetts Ave, NW, Washington DC 
$149/night + 14% DC Tax Click here to book your room or Call (202) 939-4208 & ask for the EveryLife Foundation Room Block. Complimentary internet in guest rooms; complimentary breakfast. There are a limited number of rooms available at the discounted rate.

Learn more about the Rare Disease Week on Capitol Hill and see all the events happening in Washington, DC during Rare Disease Week!