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ASB Recognized as Leader in Early Medical Education

The Amyloidosis Speakers Bureau (ASB) is recognized as a leader in enhancing medical education and awareness, starting in medical school and continuing through fellowship, which is essential for improving early disease recognition.

 

In an editorial comment titled “Delayed Diagnosis of Transthyretin Amyloid Cardiomyopathy in the Modern Era: Seeing the Forest through the Trees” published in the JACC on January 7, 2026 by Melissa A. Lyle, MD and Jose N. Nativi-Nicolau, MD of the Mayo Clinic, the ASB received a powerful recognition in support of our medical education initiative.

The editorial commented on the recent transformation in the field of amyloid cardiomyopathy. It references a comprehensive retrospective analysis leveraging data from the Veterans Health Administration, the nation’s largest integrated health care system, to examine diagnostic patterns in patients with heart failure (HF) and ATTR-CM between 2016 and 2022. This study underscores a critical gap: Even within a highly integrated health system with access to diagnostic tools and longitudinal data, under-recognition and delayed diagnosis of ATTR-CM remain pervasive.

“Why does diagnostic delay matter so much? Although it may seem less urgent given that patients are eventually diagnosed and ATTR-CM is generally considered a more indolent condition than amyloid light-chain amyloidosis, the clinical impact of delayed diagnosis is significant. Studies have shown that even a delay of 3 months can result in patients presenting with a higher NYHA classification, indicating more advanced disease at the time of diagnosis.8 Most importantly, we now have 3 U.S. Food and Drug administration–approved therapies for ATTR-CM that not only extend survival but also reduce HF hospitalizations and improve quality of life. Crucially, these treatments are most effective when initiated in the earlier stages of disease. With this growing arsenal of disease-modifying therapies, timely diagnosis is no longer just ideal, it is imperative.

To reduce diagnostic delays and shift clinical focus from treating isolated comorbidities to the broader picture, we must begin to “see the forest” instead of just the trees. Three strategies may help. First, enhancing education and awareness, starting in medical school and continuing through fellowship, is essential for improving early recognition. Advocacy organizations like the Amyloidosis Speakers Bureau, a nonprofit entity dedicated to educating medical trainees and early-career clinicians, lead the way with raising awareness among providers.9 Second, clinicians should more consistently apply existing diagnostic tools, such as the ATTR-CM score,10 to avoid overlooking amyloidosis in patients with HFpEF. Third, integrating artificial intelligence into diagnostic workflows could identify potential cases by identifying red flags, within electronic medical records, prompting consideration of cardiac amyloidosis alongside common comorbidities such as atrial fibrillation, coronary artery disease, and chronic kidney disease. If we do not think of amyloidosis, we will not diagnose it. In 2025, we have the tools to identify and treat ATTR-CM. We just need to look up from the trees in time to recognize the forest, often hiding in plain sight.”

The Story Behind the Amyloidosis Speakers Bureau

The story behind the Amyloidosis Speakers Bureau (ASB) is very special. In this video we hear where the original concept of patients presenting to medical students came from — Dr. Gordon Huggins of Tufts University School of Medicine. Hear how he was “auditioning” his patients to speak to his class of second year cardiovascular medical students, and then he met Charolotte Raymond. It was an experience so meaningful it inspired Charolotte to conceptualize a program whereby patients would educate medical students across the country. She partnered with Mackenzie’s Mission in 2018, where together we took her original concept and collectively developed it into the Amyloidosis Speakers Bureau. The ASB was officially founded February 1, 2019.

Why Patients Join the ASB

The heart and soul of the Amyloidosis Speakers Bureau are our patient educators. They share their authentic journey of battling amyloidosis, from symptoms to diagnosis, treatment, and life today. Their stories provide an impactful education to medical students and residents, raising awareness of this disease. As a result, these future physicians will be better prepared to suspect amyloidosis, leading to earlier diagnosis, treatment and ultimately improving patient lives.

Closing the Medical Education Gap

Lack of awareness, a gap in medical education, is among the most critical and urgent challenges facing the amyloidosis community today. Raising awareness to accelerate diagnosis, coupled with available FDA-approved treatments, leads to a significant improvement in patient lives. The Amyloidosis Speakers Bureau (ASB) brings the patient voice to medical education, complementing traditional didactic and clinical studies. Together, this narrows the education gap and results in a more robust and durable education of medical trainees, thereby accelerating diagnosis and improving patient lives.

Please WATCH this powerful message from amyloidosis experts to medical educators.

 

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