rare-disease-week-logo

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.

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save

Save the Date: 2017 Rare Disease Week on Capitol Hill

Please click the events below to register.  Registration for the Congressional Caucus Briefing will be available shortly.

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

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

Tuesday, February 28th: Legislative Conference (Click here to register)
Presented by Horizon Pharma
FHI 360
1825 Connecticut Ave NW, Washington, DC 20009
Click here to view a tentative Legislative Conference agenda

Wednesday, March 1st: Lobby Day Breakfast & Hill Meetings (Click here to register)

Wednesday, March 1st: Rare Artist Reception (Click here to register)
Kennedy Caucus Room, Russell Senate Office Building

Thursday, March 2nd: Rare Disease Congressional Caucus Briefing
Presented by Amgen
United States Capitol Visitor Center

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.

View 2015 Presentations

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