Category: Advocacy

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....

"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...

Amyloidosis Research Consortium is hosting a critical meeting with the FDA in Bethesda on November 16th, 2015. This is an unprecedented opportunity: patients can inform the FDA about their experience and unmet needs. At the FDA's request, amyloidosis experts will...