National Rare Disease Week goes to Washington
More than 500 patient advocates met in Washington, D.C., this week in recognition of National Rare Disease Week, where they aim to educate and lobby members of Congress, as well as empower themselves to become better voices for those with conditions that seldom get the spotlight.
Led by the Rare Disease Legislative Advocates (RDLA), a program of the nonprofit EveryLife Foundation for Rare Diseases, the event is scheduled for Sunday, Feb. 24, through Thursday, Feb. 28, and includes patients, families, friends and health care providers meeting with each other and learning how best to advocate for their interests on Capitol Hill.
“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,” read a statement from the RDLA website. “During the week of February 24-28, 2019, advocates will have an opportunity to meet with members of Congress and learn best practices for successful advocacy.”
The week’s events will include the RDLA’s Legislative Conference, where attendees will learn about the legislative process, current legislation under consideration by Congress and effective advocacy techniques aimed at building relationships with members of Congress and staff. The next day, advocates will go to Capitol Hill to meet with senators, representatives and staffers to discuss key legislation, policies and the Rare Disease Congressional Caucus.
On Feb. 27, the Rare Disease Congressional Caucus will host rare disease advocates and Congressional staffers for a lunch briefing. Later this evening, the Rare Artist Reception will feature the winner of the 2018 Rare Artist contest. Participants will close out the week on Thursday, with a Rare Disease Day event hosted by NIH in Bethesda, Maryland. This event will raise awareness about rare diseases, the people they affect and NIH research collaborations to advance new treatments.
“We are excited for this powerful week of events and to continue to advocate with the rare disease community,” read a statement on the RDLA website. “By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government.”