We are excited to host patients, caregivers, physicians and other advocates from across the country at Rare Disease Week on Capitol Hill, which will take place from February 25th through March 1st, 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.
The EveryLife Foundation for Rare Diseases will provide travel stipends through its Rare Giving program 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 are $400 for Maryland and Virginia, $800 for the rest of the continental U.S., and $1,000 for Alaska, Hawaii and Puerto Rico. They are limited to one per family.
Applications are available online through December 10th, and all applicants will be notified by December 18th whether they will receive a stipend or are on the waitlist. This year, close to $75,000 in stipends was awarded to 95 advocates from 48 states!
The schedule of events, details on the hotel room block and additional information is available on the Rare Disease Week on Capitol Hill webpage. Registration will open on January 3, 2018.