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RARE DISEASE DAY EVENTS
RDLA is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America and Darlington House to ensure that Rare Diseases Advocates are present on Capitol Hill during Rare Disease Week! Join us and make sure Congress hears your voice! Tuesday, February 28, 2012 RDLA Lobby Day Financial Assistance Available: To help offset travel costs, small $500 travel scholarships are available to advocates who wish to attend and demonstrate financial need. To apply, please click here to download the application. Limited number of scholarships available. Scholarships will be distributed in order to ensure a diverse representation of the rare disease community can participate. Please return completed applications via email to patientadvocate@kakkis.org or fax at 415-884-0562.
February 28, 2011, Washington DC: An Extraordinary Rare Disease Day Invitation RDLA hosted a Cocktail Reception and Movie Screening of Extraordinary Measures in Washington, DC. Special Guests included John Crowley, the father who inspired the movie and former Congress Member Dick Gephardt (D-MO) and now Chairman of the Council for American Medical Innovation.
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