RARE DISEASE – Lobby Day – February 28, 2012

R.A.R.E.Project.org announces Rare Disease

Lobby Day with RDLA

Rare Disease Legislative Advocates (RDLA) is partnering with the EveryLife Foundation for Rare Diseases, RARE Project, Sarcoma Foundation of America, Darlington House and ViroPharma to ensure that rare disease advocates are present on Capitol Hill during Rare Disease Week!

Join their efforts and make sure Congress hears your voice!

Lobby Training Breakfast
7:30a.m. – 9:30a.m.  Darlington House 1610 20th ST NW Washington DC
Learn about the Rare Disease Congressional Caucus and legislation to help spur the development of treatments for rare disease patients, including the ULTRA Act and Creating Hope Act 

Hill Meetings with your Representatives

10:00a.m. – 5:00p.m. on Capitol Hill
Transportation will be provided from the Darlington House to Capitol Hill
Each advocate will be scheduled for at least three meetings

Happy Hour Lobby Day Celebration
5:30p.m. – 7:00p.m.  Darlington House 1610 20th ST NW Washington DC
Join us to share your meeting experiences and feedback from Congress
The happy hour includes appetizers & a no host bar

Financial Assistance Available:  To help offset travel costs, $500 travel scholarships are available to advocates who wish to attend and have financial need.  To apply, please click here to download the application.  A limited number of scholarships are 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.

HOTEL:  We have reserved a block of hotel rooms for Monday & Tuesday nights at The Embassy Row Hotel at the discounted rates of $169 single or $189 double per night.  The Hotel is located in Dupont Circle a 5 minute walk from the Darlington House.  To receive the discounted rate, please book directly with the Hotel by calling 202-265-1600 and mentioning the group “Rare Disease Day Lobby Day.”  Please book your hotel room immediately as we will not be able to guarantee this rate once our block of rooms is filled.  Discounted rate expires on Feb. 20th.

If you can’t join us in DC, please stay tuned for Action Alerts!  We will email you ways to participate in Rare Disease Day from your home or office by making calls and sending emails to your Members of Congress and sending emails to support legislation that will help spur the development of lifesaving treatments!

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