RDLA’s Rare Disease Week on Capitol Hill Itinerary

February 6, 2017

Register TODAY to join fellow rare disease patients, caregivers and other advocates from across the country at Rare Disease Week on Capitol Hill on February 27th through March 2nd, 2017. We welcome seasoned advocates as well as those who are brand new to legislative advocacy, and will provide the information you need to be effective in your meetings with Members of Congress. 

All of the events are free for rare disease advocates, but advance registration is required for each. This is an opportunity for YOU to help educate the new Congress and shape healthcare policy to better meet the needs of the rare disease community.

Monday, February 27th, 8:30am-4pm: Rare Disease Day at the National Institutes of Health (NIH) in Bethesda, MD: Registration is available on the NIH website

Monday, February 27th5:30-9:30pm: Cocktail Reception and Rare Disease Documentary Screeningpresented by Vertex Pharmaceuticals featuring Up for Air at the Naval Heritage Center: Registration is available HERE.

Tuesday, February 28th, 9am-5pm: Legislative Conference presented by Horizon Pharma at FHI 360
Wednesday, March 1st, 7:30-9am: Lobby Day Breakfast at Hyatt Regency on Capitol Hill
Wednesday, March 1st, 9am-5pm: Lobby Day Meetings with Members of Congress on Capitol Hill
Registration for these three events is available HERE through February 12th. Please note that attendance at the Legislative Conference is required to participate in Lobby Day. 

Wednesday, March 1st5-7pm: Rare Artist Reception at the Russell Senate Office Building: Registration is available HERE.

Thursday, March 2nd12-1:30pm: Rare Disease Congressional Caucus Briefing presented by Amgen in the Dirksen Senate Office Building: 

We encourage anyone planning to join us to participate in a webinar on February 8th at 2pm ET for an overview of each event and the opportunity to ask questions. You can register for this webinar HERE.

For more information on Rare Disease Week on Capitol Hill, please visit

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