AL-Amyloidosis Educational Toolkit

Accelerating Diagnosis. Advancing Multidisciplinary Care. Improving Outcomes.
Bridging Gaps in the AL-Amyloidosis Patient Pathway
In collaboration with expert panelists, researchers, and advocacy organizations, the American Heart Association (AHA) is advancing a nationwide initiative to identify and address critical gaps across the AL-Amyloidosis care continuum—ensuring earlier diagnosis, timely referrals to specialized care, and comprehensive patient support throughout the journey.

"I am here today because I had a cardiologist who did not give up on me. He looked at the big picture, suspected a systemic cause of my myriad symptoms and ordered a blood test that led to my diagnosis and treatment. I owe him my life."
AL-Amyloidosis Patient
"AL-Amyloidosis can be a chronically managed disease and not uniformly fatal if found early, so please consider systemic amyloidosis in your differential diagnosis in the right clinical situation."
Professor of Medicine, Arnold and Arlene Goldstein Professor of Cardiology, New York Presbyterian Hospital-Columbia University Medical Center
"Once you have a suspicion of amyloidosis, the key is swift evaluation. Diagnostic delays can be detrimental for patients with AL-Amyloidosis. Through continued education and increased awareness, we can all work together to improve outcomes."
Assistant Professor of Medicine, Consultant, Division of Advanced Heart Failure and Transplant, Mayo Clinic College of Medicine, Mayo Clinic in Florida, Jacksonville, Florida
"Raising awareness of AL-Amyloidosis is vital--timely and accurate diagnosis is key to enabling early treatment and improving patient outcomes."
Assistant Professor of Medicine, Advanced Heart Failure and Transplant Cardiology, Standford MedicineWhat is AL-Amyloidosis?
AL-Amyloidosis (Light Chain) is a rare but life-threatening disease caused by abnormal plasma cells producing misfolded light chain proteins.
These proteins form amyloid fibrils that deposit in organs--most commonly affecting:
- Heart
- Kidneys
- Liver
- Nervous System
This leads to progressive and often irreversible dysfunction.
Early suspicion and testing are critical--AL-Amyloidosis often presents with vague symptoms, and delays in diagnosis can result in severe organ failure. Diagnosis should be treated as a medical emergency, as rapid intervention is essential to prevent further damage.
A high index of suspicion and prompt action can significantly improve patient outcomes.
AL-Amyloidosis Educational Toolkit
This toolkit offers a curated set of downloadable resources to support the entire clinical care team--primary care clinicians, cardiologists, hematologists, and other specialists--in the early recognition, accurate diagnosis, and comprehensive management of AL-Amyloidosis.
- AL-Amyloidosis Clinician Pocket Card (PDF): a quick-reference tool with an overview of symptoms, initial diagnostic testing, and patient management guidance.
- AL-Amyloidosis Quick Reference Guide (PDF): an in-depth resource featuring diagnostic algorithms, differential diagnosis considerations, symptom references, initial and advanced testing clinical management strategies, and links to patient advocacy support.
Advocacy & Awareness Materials
Explore trusted advocacy groups offering education, support, and resources for patients, caregivers, and health care professionals involved in AL-Amyloidosis care.
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Mackenzie's Mission / Amyloidosis Speakers Bureau Dedicated to raising awareness of amyloidosis through patient stories and educational outreach. The Amyloidosis Speakers Bureau connects health care audiences with patients and caregivers who share firsthand experiences to promote earlier diagnosis and understanding. - www.mm713.org |
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Amyloidosis Support Groups (ASG) Provides nationwide peer-led support groups, educational meetings, and resources for patients and families affected by all types of amyloidosis. ASG is a valuable source of community connection and patient advocacy. - www.amyloidosissupport.org |
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Amyloidosis Research Consortium (ARC) Focused on accelerating the development of new diagnostics treatments, ARC engages with researchers, healthcare providers, and patients to drive meaningful progress in amyloidosis research and care delivery. - arci.org |
References
- Kittleson MM, Maurer MS, Ambardekar AV, et al. Cardiac amyloidosis: Evolving Diagnosis and Management: A Scientific Statement from The American Heart Association. Circulation. 2020;142(7):e7-e22. doi:10.1161/CIR.0000000000000792
- Maurer MS, Elliott P, Comenzo R, Semigran M, Rapezzi C. Addressing Common Questions Encountered in the Diagnosis and Management of Cardiac Amyloidosis. Circulation. 2017;135(14):1357-1377. doi:10.1161/CIRCULATIONAHA.116.024438
- Dorbala S, Ando Y, Bokhari S, et al. ASNC/AHA/ASE/EANM/HFSA/ISA/SCMR/SNMMI Expert Consensus Recommendations for Multimodality Imaging in Cardiac Amyloidosis: Part 1 of 2—Evidence base and standardized methods of imaging. Circ Cardiovasc Imaging. 2021;14(7):e0000029. doi:10.1161/HCI.0000000000000029
- Dorbala S, Ando Y, Bokhari S, et al. ASNC/AHA/ASE/EANM/HFSA/ISA/SCMR/SNMMI Expert Consensus Recommendations for Multimodality Imaging in Cardiac Amyloidosis: Part 2 of 2—Diagnostic Criteria and Appropriate Utilization. Circ Cardiovasc Imaging. 2021;14(7):e0000030. doi:10.1161/HCI.0000000000000030
- Ioannou A, Porcari A, Patel RK, et al. Rare Forms of Cardiac Amyloidosis: Diagnostic Clues and Phenotype in Apo AI and AIV Amyloidosis. Circ Cardiovasc Imaging. 2023;16(7):e015259. doi:10.1161/CIRCIMAGING.123.015259
- Kittleson MM, Ruberg FL, Ambardekar AV, et al. 2023 ACC Expert Consensus Decision Pathway on Comprehensive Multidisciplinary Care for the Patient With Cardiac Amyloidosis: A Report of the American College of Cardiology Solution Set Oversight Committee. J Am Coll Cardiol. 2023;81(11):1076-1126. doi:10.1016/j.jacc.2022.11.022
- Bloom MW, Vo JB, Rodgers JE, et al. Cardio-Oncology and Heart Failure: AL Amyloidosis for the Heart Failure Clinician: A Supplement to the Scientific Statement from the Heart Failure Society of America. J Card Fail. 2025;31(2):456-463. doi:10.1016/j.cardfail.2024.08.046
- Garcia-Pavia P, Rapezzi C, Adler Y, et al. Diagnosis and Treatment of Cardiac Amyloidosis: A Position Statement of the ESC Working Group on Myocardial and Pericardial Diseases. Eur Heart J. 2021;42(16):1554-1568. doi:10.1093/eurheartj/ehab072
- Grogan M, Lopez-Jimenez F, Cohen-Shelly M, et al. Artificial Intelligence-Enhanced Electrocardiogram for the Early Detection of Cardiac Amyloidosis [published correction appears in Mayo Clin Proc. 2023 Jan;98(1):211. doi: 10.1016/j.mayocp.2022.10.002.]. Mayo Clin Proc. 2021;96(11):2768-2778. doi:10.1016/j.mayocp.2021.04.023
- Dima D, Mazzoni S, Anwer F, et al. Diagnostic and Treatment Strategies for AL Amyloidosis in an Era of Therapeutic Innovation. JCO Oncol Pract. 2023;19(5):e632-e640. doi:10.1200/OP.22.00396