Resources

Despite having many of the "red flag" symptoms of amyloidosis, Cece still experienced a delay in diagnosis. Cece shares her story, how a genetic condition has impacted her family, and how a heart transplant changed her life.  

Greg Foster, 4-time world champion and Olympic Silver medalist, discusses his journey to diagnosis. Learn more about his initial symptoms, multiple doctors visits, and what drove him to continue pursuing an accurate diagnosis of AL Amyloidosis, despite being told he had Athlete's Heart.

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.

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.

ARC-supported consensus best practice recommendations for the diagnosis of ATTR amyloidosis with polyneuropathy published in the Journal of Neurology, Circulation: Heart Failure.

Genetic counselors Emily Brown and Katelyn Swade provide an overview of the science of genetic testing. They also discuss importance of genetic counseling for hereditary ATTR patients and their families.

"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.

ARC-supported consensus best practices guidelines for the diagnosis of cardiac ATTR amyloidosis published in the journal of the American Heart Association, Circulation: Heart Failure.