Save the Date for Rare Disease Week on Capitol Hill: February 25 – March 1, 2018

We are excited to host patients, caregivers, physicians and other advocates from across the country at Rare Disease Week on Capitol Hill 2018. There is much work to do to educate members of the U.S. House of Representatives and Senate on the impact of rare disease on patients and families in their districts.

Please mark your calendar for the following events, all of which are FREE for rare disease advocates:

SUNDAY, February 25th
Cocktail Reception and Rare Disease Documentary Screening presented by Amgen at the Naval Heritage Center

MONDAY, February 26th
Legislative Conference at the Ronald Reagan Building

TUESDAY, February 27th
Lobby Day Breakfast at Washington Court Hotel on Capitol Hill

TUESDAY, February 27th
Lobby Day Meetings with Members of Congress on Capitol Hill

WEDNESDAY, February 28th
Rare Disease Congressional Briefing on Capitol Hill

WEDNESDAY, February 28th
Rare Artist Reception on Capitol Hill

THURSDAY, March 1st
Rare Disease Day at the National Institutes of Health (NIH) at NIH campus in Bethesda, MD

Registration will open on January 3, 2018.

Applications for Travel Stipends Due by December 10th, APPLY HERE NOW!

The EveryLife Foundation for Rare Diseases will provide travel stipends to enable advocates from across the country to participate. In order to receive a stipend, advocates must attend the Legislative Conference and Lobby Day. Stipends range from $400 to $1,000 depending on the distance to be traveled, and are limited to one per family. Applications are available online through December 10th. This year, we awarded close to $75,000 to 95 advocates from 48 states!

Room Block

There is a limited number of rooms reserved at the Washington Court Hotel at the rate of $219 per night plus tax. To book a room, please call 1-800-321-3010 and mention “EveryLife Foundation for Rare Diseases” for the group rate. Service animals are welcome and Wi-Fi is complimentary.

Cheaper accommodations can be found through and other travel websites. You should try to be metro accessible. For those that are interested in staying close to the HA office, here are some hotels near the office: Hilton Garden Inn Bethesda, Residence Inn Marriott or Bethesda Court Hotel. HA staffer will happily meet anyone and metro down to the meetings and to Capitol Hill if you chose to stay in Bethesda.


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