Category: ARC News

ARC CEO Named Representative of Patient Engagement Collaborative
To strengthen patient involvement, the U.S. Food and Drug Administration (FDA) and the Clinical Trials Transformation Initiative (CTTI) announced the launch of the Patient Engagement Collaborative (PEC). (more…)
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Survey
Hereditary ATTR Patient and Caregiver Treatment Survey
ARC has designed a survey to find out what matters most to patients and their caregivers about treatments for hereditary transthyretin amyloidosis (hATTR).  (more…)
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Clinical Resources APP
ARC Launches Version Two of Powerful Amyloidosis Diagnostic App
A recent ARC survey showed that patients typically see four or more physicians before getting accurately diagnosed, and often those who were misdiagnosed were receiving treatment for their misdiagnosis. The Clinical Resources App was developed to provide healthcare professionals with...
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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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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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