Resources

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

 

Patients
physicians
Webinars
ARC Talks: Managing Amyloidosis during COVID-19. Patient and Physician webinars
These two webinars provide detailed information about how to manage systemic amyloidosis during the time of the COVID-19 pandemic. They include the International Society of Amyloidosis Guidelines, high risk patient considerations, an update on clinical trials, policy changes that affect care and reimbursement of treatments. Click title to watch: PATIENT WEBINAR: How to manage your amyloidosis during COVID-19 PHYSICIAN WEBINAR: Managing amyloidosis patients during COVID-19
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Patients
Patients
Tools
Video: How to Prepare for your Telehealth Visit
As many more provider visits are being conducted virtually, it is important that you are setup and well prepared ahead of time. This video will take you through all the steps.
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Patients
Patients
Webinars
ARC Talks: Physical and Occupational Therapy – Managing Your Amyloidosis
In this patient webinar, Mayo Clinic's occupational therapist Sarah Dahlhauser, OTD, OTR/L, and physical therapist Sarah Boyd, PT, DPT, discuss exercise principles for maintaining mobility and function, and home modifications for improved safety for amyloidosis patients.
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Patients
Publications
ARC’s European Health Technology Assessments (HTA) Toolkit
ARC's comprehensive European Health Technology Assessments (HTA) Toolkit was produced to give information about how treatments are evaluated and approved for use in the various member state healthcare systems. The Toolkit guides patients and patient groups on how they can participate in the process to ensure that those treatments that are developed for their amyloidosis can be made available in their countries.
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Publications
Webinars
ARC Talks: Contemporary Management of AL Amyloidosis
In this patient webinar, Dr. Heather Landau, a leading hematologist at Memorial Sloan Kettering Cancer Center, discusses current therapies, clinical trials, and symptom management strategies for patients with AL amyloidosis.
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Webinars
Publications
Expert Consensus Recommendations to Improve Diagnosis of ATTR Amyloidosis with Polyneuropathy
ARC-supported consensus best practice recommendations for the diagnosis of ATTR amyloidosis with polyneuropathy published in the Journal of Neurology, Circulation: Heart Failure.
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Publications
Patients
Webinars
ARC Talks: Genetic Testing for Transthyretin Amyloidosis
Genetic counselors Emily Brown and Katelyn Swade give an overview of the science of genetic testing and the importance of genetic counseling for ATTR patients.  
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Patients
Publications
Amyloidosis Research Consortium Cardiac Amyloidosis Survey: An International Analysis of the Diagnostic Journey in AL and ATTR Amyloidosis
"Amyloidosis Research Consortium Cardiac Amyloidosis Survey: An International Analysis of the Diagnostic Journey in AL and ATTR Amyloidosis," was presented at the 23rd annual Heart Failure Society of America meeting from September 13-16, 2019 in Philadelphia, PA. This poster presents results from 745 patients and caregivers and highlights regional differences, changes over time, and how we can improve the diagnostic journey of amyloidosis patients.
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Publications

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