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Thank you to the more than 350 advocates who joined us for Rare Disease Week on Capitol Hill last year.  During this exciting week, rare disease community members from across the country learned about federal legislative issues, met other advocates, and shared their unique stories with legislators.  Below is a video from the 2015 Rare Disease Week on Capitol Hill, including testimony from advocates who participated.

What is Rare Disease Week 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.

The week of events starts with the Rare Disease Documentary Screening and Cocktail Reception on Monday evening.

On Tuesday, advocates attend RDLA’s Legislative Conference to learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build a relationship with Members of Congress and staff. The conference is crafted to educate advocates with little to no political experience and to provide useful updates to those with a history of political action. Our aim is to have every advocate leave the Legislative Conference with confidence in their ability to make a difference on Capitol Hill.

On Lobby Day, advocates put what they learned at the Legislative Conference to work. At breakfast, keynote speakers prepare attendees for the day of meetings with Members of Congress and their staff, raising awareness of rare disease and advocate for the legislation most relevant to them. That evening, the EveryLife Foundation hosts the Rare Artist Reception with artists from around the country displaying their work and sharing their experience with rare disease with Members of Congress and staff.

On Thursday, advocates have the opportunity to attend the Rare Disease Congressional Caucus briefing, which will convene policy experts and rare disease stakeholders to educate Congressional staff and the public on issues of importance to the rare disease community.

All events are free for patients, caregivers and other advocates but advance registration is required for each event.  Please sign up for our email list or check this page regularly. You can also follow RDLA on Twitter and Facebook for updates.

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2017 Rare Disease Week on Capitol Hill

A list of events with addresses is available here. Please note all events require advance registration.

Monday, February 27th: Rare Disease Day at NIH
National Institutes of Health, Masur Auditorium (Building 10)
9000 Rockville Pike, Bethesda, MD 20892

Monday, February 27th: Rare Disease Documentary Screening and Cocktail Reception
Presented by Vertex
United States Naval Heritage Center
701 Pennsylvania Ave NW, Washington, DC 20004

Tuesday, February 28th: Legislative Conference
Presented by Horizon Pharma
FHI 360
1825 Connecticut Ave NW, Washington, DC 20009
Handouts and multimedia from the Legislative Conference can be found here.

Wednesday, March 1st: Lobby Day Breakfast
Hyatt Regency Washington
400 New Jersey Avenue NW,
Washington, DC 2001

Wednesday, March 1st: Lobby Day

Wednesday, March 1st: Rare Artist Reception
Kennedy Caucus Room, Russell Senate Office Building

Thursday, March 2nd: Rare Disease Congressional Caucus Briefing
Room 902, Hart Senate Office Building
Videos from the Caucus briefing can be found here.

Travel Stipends

Applications for travel stipends are now closed.  Applicants will be notified of their status on January 3rd, 2017.

Thank you to
Horizon Pharma
for providing additional funding for the Rare Disease Week on Capitol Hill travel stipend program.

Patient Stories

Thank you to everyone who submitted a personal statement as a patient or caregiver by the deadline of February 19, 2017. They will be hand-delivered to Congress on Lobby Day.

View 2015 Presentations

View presentations and printed materials from the 2015 Rare Disease Week on Capitol Hill at the event’s archival page.