Legislative News


ATS Hill Day

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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LGDA participates in 1st Rare Bone Disease Advocacy Day on Capitol Hill

The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is a founding member of the newly created Rare Bone Disease Advocacy Alliance, a coalition of rare bone disease organizations committed to advancing research of rare bone diseases by working directly with Congress and the Executive Branch. On September 18, 2013, advocates from ...
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Washington D.C.—Recognizing that many patients either have no treatments available for their rare diseases or are using older therapies not designed for their disease and the need to update the Food and Drug Administrations decades-old Accelerated Approval regulation, Congressmen Cliff Stearns and Edolphus Towns on March 5, 2012, introduced House ...
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