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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AL Amyloidosis: Patient Experience Published
533 patients took part in our survey earlier this year and it has given some very valuable insight into the experiences of patients with AL and ATTR amyloidosis. The information has been shared at a number of key medical meetings...
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ARC Poster Presentation
This poster detailed the experience of hereditary ATTR and wild-type TTR amyloidosis patients. It outlines the significant challenges for obtaining a correct diagnosis and access to appropriate therapy. The poster was shown at the 1st European Congress on Hereditary ATTR...
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Breakthrough on Biomarkers
Amyloidosis Research Consortium Calls For Regulators To Adopt New Surrogate End Point For Pivotal Clinical Trials In Patients with AL Amyloidosis Cardiac functional biomarker is a validated end point used universally by amyloidosis specialists to determine treatment outcomes and to...
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Join us and the FDA for a patient focused meeting on amyloidosis
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...
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