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Rare Disease Week Logo
Can’t Attend Rare Disease Week? Five Ways to Participate Remotely
Rare disease day is on February 28th and every year the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, hosts Rare Disease Week on Capitol Hill. The entire week provides a unique opportunity to raise awareness...
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Research Meeting
Developing a Blueprint for Amyloidosis Research
Amyloidosis experts from academia, industry and the FDA met last week for the Amyloidosis Research Consortium Inaugural Research Strategy Roundtable in Miami. The meeting, which brought together representatives from across the research continuum for the first time, was designed to...
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Greg Foster
Olympic Athlete Greg Foster Struggles to Find Accurate Diagnosis
At Age 57, Retired American hurdler, Olympic Silver-medalist, and 4-time world champion in the 110-meter hurdles, Greg Foster, was diagnosed with AL Amyloidosis. Below, he recounts his long journey to finding a diagnosis. In early 2016, I was diagnosed at...
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Isabelle Lousada
ARC CEO Isabelle Lousada Featured as Rare Leader
Global Genes, a disease advocacy organization, recently interviewed ARC CEO Isabelle Lousada as part of their Rare Leader Profile series. The series gives insight into people who lead rare disease organizations. Below is a copy Isabelle's Q&A that was featured...
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ASH 2017
Highlights from ASH 2017: Research Update
AL amyloidosis was placed in the spotlight at the American Society of Hematology (ASH) annual meeting in Atlanta, Georgia when ARC Board member Dr. Giampaolo Merlini, from the University of Pavia, Italy, gave the prestigious keynote Ham-Wasserman lecture on the...
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