Category: Advocacy

Amyloidosis Voice at Global Genes Summit
On September 22nd and 23rd two members of the Amyloidosis Research Consortium were invited speakers at the Global Genes 5th Annual RARE Patient Advocacy Summit event in Huntington Beach, California. ARC CEO Isabelle Lousada delivered a presentation on The Patient's Role in...
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ARC Creates Pathway for Patient Engagement with FDA
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...
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Blazing the Trail for Amyloidosis in Brazil
Guilherme José Jucá Calheiros carried the Olympic torch in Maceio (AL) Brazil. Guilherme is diagnosed with ATTR Familial Amyloidosis (FAP), which is a rare autosomal dominant amyloidosis disease caused by the deposition of abnormal transthyretin that results from a gene mutation....
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Advocates Take on The Hill
"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...
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Patient Forum with FDA
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...
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