Resources

ARC provides patients and healthcare professionals with the latest, up-to-date resources to
help improve treatment and care of patients with amyloidosis.

 

Tools
ARC Cardiac Amyloidosis Alert Card
This easy-to-use pocket card identifies “low voltage” EKGs in combination with ECHO images of increased ventricular mass, which are very specific for amyloid and should trigger additional testing to confirm amyloidosis.
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Tools
Patients
Webinars
Webinar: What is Expanded Access?
This webinar covers access to innovative new therapies through expanded access programs with guest speakers Jennifer Miller, PhD, Assistant Professor at Yale University School of Medicine and Alison Bateman-House, PhD, MPH, Assistant Professor at NYU School of Medicine.
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Patients
Publications
Voice of the Patient Report
A comprehensive report submitted to the FDA in 2016 by ARC. This is a detailed summary of the patient testimony presented at the Patient-Focused Drug Development meeting. This report will serve a critical function in communicating to both FDA review staff and industry the improvements that patients want and hope to see in their daily lives.    
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Publications
Publications
Rationale, Application and Clinical Qualification for NT-proBNP as a Surrogate End Point
Published: Leukemia, July 2016 | Author: G Merlini et al.
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Publications
Publications
Light Chain Amyloidosis Patient Experience Survey
Published: Advances in Therapy, 2015 | Author: I Lousada et al.
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Publications
Publications
ARC Cardiac Amyloidosis Survey: Results from AL Patients and Caregivers
Amyloidosis Research Consortium Cardiac Amyloidosis Survey: Results from Patients with AL Amyloidosis and Their Caregivers, was presented at the European Hematology Association (EHA) 22nd Annual Congress from June 22 - 25, 2017 in Madrid, Spain. This poster captures results from 137 AL amyloidosis patients and caregivers to help understand the difficult diagnostic journey and experiences of AL amyloidosis patients.
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Publications
Publications
Guidance for Industry AL Amyloidosis – Developing Drugs for Industry
Developing the guidance involved active participation from all stakeholder groups including patients, medical experts, academics and biopharmaceutical industry representatives. This guidance has been submitted to FDA.
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Publications
Tools
ARC Clinical Resources APP
Learn how this valuable tool developed by ARC is giving healthcare professionals easy access to critical and current medical information and improving diagnosis.
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Tools

AMYLOIDOSIS RESEARCH CONSORTIUM, INC.
320 Nevada Street, Suite 210 Newton, MA 02460 USA | 617-467-5170
arc@arci.org

ARC is a 501(c)(3) nonprofit organization