Legislative News


 

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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FAST Act

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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