Rare Disease Week on Capitol Hill (February 25 - 28, 2020) brings rare disease community members from across the United States together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. We hope to have patients and families from across the country ...
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Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation. This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease ...
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Advocates Visit Michigan State House to Lobby for Rare Disease LGDA Warrior Mom Sandra Goldfarb joined 75 other rare disease advocates at the Michigan State House in Lansing on February 28, 2017, to lobby for the establishment of a Rare Disease Advisory Council in Michigan.  This Council will give rare ...
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On July 16, 2015, the Ensuring Access to Clinical Trials Act (EACT), S 139/HR 209, which will permanently remove a barrier to clinical trial participation for those with rare diseases was passed in the United States Senate by unanimous consent. EACT makes permanent the Improving Access to Clinical Trials Act ...
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U.S. House Passes 21st Century Cures Act; NIH Funding Increase Included Friday, July 10, 2015 - The U.S. House of Representatives today has passed the 21st Century Cures Act, a large health research bill aimed at speeding the development of new treatments and cures, by a vote of 344–77. The ...
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LGDA Participates in ATS Hill Day 2014 In late March, ATS officers and patient representatives of the Public Advisory Roundtable (PAR), of which the Lymphangiomatosis & Gorham’s Disease Alliance is a member, visited Washington, D.C., to advocate for respiratory health as part of ATS Hill Day 2014. Events like the ...
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