RDLA has a plethora of tools you can use to amplify your voice and make sure it is heard in Government.

– Follow and track the bills affecting the Rare Disease Community, including the bills rare disease advocates lobbied for during Rare Disease Week 2014: http://www.congressweb.com/kaki/bills

– Find, write, and call your elected officials to tell them what you want their priorities to be: http://www.congressweb.com/kaki/legislators

– Use this link to find media contacts in your area and send an op ed to your local paper: http://www.congressweb.com/kaki/media

– Find information on the elections in your area: http://www.congressweb.com/kaki/voterinformation

Library of Congress

THOMAS was launched in January of 1995, at the inception of the 104th Congress. The leadership of the 104th Congress directed the Library of Congress to make federal legislative information freely available to the public. Since that time THOMAS has expanded the scope of its offerings to include the features and content listed below.

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2012 RARE Patient Advocacy Summit – Session #1 – Political Advocacy – You Have The Power!

A discussion about the power you have in political advocacy at the federal, state and local levels. One voice – yours! – makes a world of difference …

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Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change

Thirty years after the emergence of the HIV/AIDS epidemic, a report co-authored by FasterCures and HCM Strategists examines how HIV/AIDS advocacy redefined patient engagement in the medical research process, and changed the drug development paradigm.

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How a Bill Becomes a Law

There are many resources that show how a bill becomes a law, however the best way to learn, is by participating in the process.  Join us for our Legislative Conference & Lobby Day!

To read out the legislative process check out VoteSmart.org

 

Opportunity to Learn From AIDS Activists – Documentary Screenings

ACT UP and their colleagues fought for nine years before winning life-saving medications. They organized a mass movement, they took to the streets, they made art, they made noise, they made a difference. Their tools included clear demands, arresting graphics, media savvy, and an ability to learn from their mistakes and refine their strategies. And a sense of humor, when appropriate, in combination with their urgent and ethical message.

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