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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.”

ASB Research Presented at DC Health Communication Conference!

Co-author Dr. Adebanke Adebayo presented our recent research about the ASB at the DC Health Communication Conference.

Our research topic:

Amyloidosis Speakers Bureau (ASB) patient narratives: Impact on information seeking behaviors among medical students

Background: According to Newman-Toker, et al. (2023), misdiagnosis–including missed, delayed, and wrong diagnoses–leads to an estimated 371,000 deaths and 424,000 permanent disabilities in the United States each year. In response to these alarming statistics, the Centers for Disease Control and Prevention (CDC, 2024), released a diagnostic toolkit that contains sections for patients, families, and caregivers. One difficult-to-diagnose disease is amyloidosis, a protein-misfolding disease. It’s hard to diagnose in part because it manifests in a variety of organs and its symptoms are similar to those of many other diseases, symptoms such as fatigue, shortness of breath, etc. In this study, patient engagement was highlighted as crucial to a correct diagnosis. Using Amyloidosis Speakers Bureau (ASB) patient educator presentations, this study explores the impact of patient educator presentations on information-seeking behaviors among medical students. The theoretical frameworks used to support this study are narrative and persuasion theories.

Methods: The Amyloidosis Speakers Bureau (ASB) arranges for amyloidosis patients to speak about their diagnostic and treatment experiences with U. S. medical students. Using a survey of U.S. medical students (N=1,634) and ASB health information mailings (N=50), we hypothesized that patients’ narratives about their diagnostic and treatment journeys would positively impact medical students’ information seeking behaviors about this disease.

Results: Participants who listened to an ASB patient speaker had significant higher means on information seeking behaviors, including the voluntary decision to sign-up to receive additional information from the ASB mailing list. Similarly, participants who listened to an ASB patient speaker were significantly more likely to open email information about amyloidosis–52.74%, than were people who received emailed health information from other organizations using distribution services like Mailchimp–20%.

Conclusions: Listening to a patient’s narrative presentation was associated with a high open rate for periodically emailed information on amyloidosis research by medical students who signed up to receive this information. We believe this study adds to the growing call-to-action to integrate patient narratives into medical curricula through platforms like the ASB. Future longitudinal studies should  be conducted to explore the outcomes reported in this study over longer time frames.

Humanizing Medical Education: Beyond Bullet Points

The content of medical education is appropriately clinically centered. The delivery of this content remains relatively unchanged over the decades – typically taught by medical professionals through lectures, PowerPoint presentations, and patient case studies. We posit that there is an essential missing component: the patient voice. During the didactic years, medical students rarely hear from patients about their symptoms, diagnostic journey, emotional management, support and resources, and relationship with the medical community. By humanizing medical didactic education, patient insights can offer an impactful and durable education that complements traditional didactics, developing what we believe will be better and more empathetic future medical practitioners.

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.

 

Amyloidosis Speakers Bureau (ASB)

The content of medical education is appropriately clinically centered. The delivery of this content remains relatively unchanged over the decades – typically taught by medical professionals through lectures, PowerPoint presentations, and patient case studies. We posit that there is an essential missing component: the patient voice. During the didactic years, medical students rarely hear from patients about their symptoms, diagnostic journey, emotional management, support and resources, and relationship with the medical community. These insights can offer impactful and durable education that complements traditional didactics in developing future medical practitioners.

Why is this important? Lack of awareness in the healthcare field 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. 

At the Amyloidosis Speakers Bureau, two years ago we set out to understand whether our patient educators were making an impact following a presentation to U.S. medical students. Would their narratives elevate the students’ understanding of this rare disease and influence their attitudes and behavioral intent regarding patients?

In short, our study findings indicated “yes.”   Click HERE to read the peer reviewed published study.

The paper finds that, in a study where medical students were randomly assigned to either listen to an amyloidosis patient’s story or to a control group, those who heard the patient’s diagnostic and treatment journey differed in attitudes and intent from those in the control group. Those who heard the patient’s story were significantly more likely to intend to improve their communication with patients, learn more about amyloidosis, and agree that listening to patients is a vital part of diagnosis. 

 

 

With great appreciation we thank Dr. Adebanke Adebayo, Dr. Katherine Rowan, and Dr. Vaishali Sanchorawala for their important contribution to this paper. We would also like to thank the many ASB patient educators who contributed to this study and continue to give their time to raise awareness to the medical community through sharing their personal journeys. We could not have done this study without any of these wonderful individuals!



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