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 91杏吧 (AHA) is advancing a nationwide initiative to identify and address critical gaps across the AL-Amyloidosis care continuum鈥攅nsuring earlier diagnosis, timely referrals to specialized care, and comprehensive patient support throughout the journey.
Spotlight: Patient Perspective & Expert Voices
At the heart of this initiative are the voices that matter most. Hear from leading clinicians driving progress—and a courageous patient whose story underscores the urgency and human impact of this work.
"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."
Linda Perez
AL-Amyloidosis Patient
"AL-Amyloidosis can be chronically managed disease and not uniformly fatal if found early, so please consider systemic amyloidosis in your differential diagnosis in the right clinical situation."
Mathew Maurer, MD
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."
Melissa A. Lyle, MD, FACC, FHFSA
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鈥攖imely and accurate diagnosis is key to enabling early treatment and improving patient outcomes."
Kevin M. Alexander, MD, FACC
Assistant Professor of Medicine, Consultant, Advanced Heart Failure and Transplant Cardiology, Stanford Medicine
What 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
- Gastrointestinal
- Nervous System
This leads to progressive and often irreversible organ 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.
Webinar & Forum Recordings
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. - |
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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. - |
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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. - |
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The AL-Amyloidosis Toolkit is proudly supported by Alexion, AstraZeneca Rare Disease. |
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