Registration Now Open for Rare Disease Week on Capitol Hill

January 11, 2017

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. 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.
All of the events are free for rare disease advocates, but advance registration is required for each. 
Monday, February 27th, 8:30am-4pm: Rare Disease Day at the National Institutes of Health (NIH)
Registration is available on the NIH website
Monday, February 27th5:30-9:30pm: Cocktail Reception and Rare Disease Documentary Screening presented 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. Please note that attendance at the Legislative Conference is required to participate in Lobby Day. 
Wednesday, March 1st5-7pm: Rare Artist Reception at the Kennedy Caucus Room of the Russell Senate Office Building Registration is available HERE.
Thursday, March 2nd12-1:30pm: Rare Disease Congressional Caucus Briefing presented by Amgen
Registration will be available later this month.
For more information on Rare Disease Week on Capitol Hill including a link to the webinar held last month, please visit
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