Category: Policy

On December 13th, President Obama signed into law the 21st Century Cures Act, a game-changing bill for medical innovation. We are very grateful to Representatives Fred Upton (R-MI) and Diana DeGette (D-CO), as well as members of their staff, for...

The Amyloidosis Research Consortium (ARC) submitted a draft guidance for industry on developing drugs for AL amyloidosis to the Food and Drug Administration (FDA), to improve the design of clinical trials and accelerate the review of potential therapies. Patients with...

Much has been said about the need to put patients at the center of drug development. The Amyloidosis Research Consortium (ARC), is doing just that. The FDA's Patient-Focused Drug Development initiative is a commitment under the fifth authorization of the...

"By sharing my story, they not only learned about amyloidosis; they also heard about our community's desperate need for approved treatments and pledged their support" I attended Rare Disease Week on Capitol Hill (February 29th– March 4th) as a Rare...

The Amyloidosis Research Consortium (ARC) held an amyloidosis patient forum with the FDA in Silver Spring, MD on November 16. 2015.  It was an historic, standing room only event for our community. The room was filled with patients that were...