The Amyloidosis Speakers Bureau (ASB) is an initiative sponsored by Mackenzie’s Mission to close the medical education gap about this disease. The core of this initiative is a live presentation, where patient educators share their personal journey with amyloidosis — from symptoms, through diagnosis, treatment, and life today battling this rare and incurable disease. Following each presentation the attendees are invited to receive ongoing information about the many facets of the disease. We are pleased that many have accepted.

To expand the body of information sent to those interested, earlier in 2023 we designed a new series of short videos recorded by our ASB advisors, the vast majority of whom are practicing physicians. The topics are varied, discussing symptoms, diagnosis, treatments, clinical trials, multidisciplinary care teams, and racial/ethnic inequities of both AL and ATTR (hereditary and wild-type).

In our Education Hub you can select to view all of our Expert Insights, and be sure to sign up for our newsletter to stay abreast of future releases.

This series offers an extraordinary education opportunity for the medical community, and we believe the patient community will also find this series valuable.

Here’s a LINK to the website page.

Enjoy!

A groundbreaking study to evaluate bringing the patient voice to medical education – Evaluating the Amyloidosis Speakers Bureau

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.”   

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. To add further credibility to our research, this paper is peer-reviewed by two well-known amyloidosis experts.

We invite you to learn more about the Amyloidosis Speakers Bureau and our educational initiative to close the medical education gap at www.mm713.org/speakers-bureau/. 

Click HERE for the PubMed LINK to the peer-reviewed open access research publication (i.e., full text is available free for all to read)

On October 15, 2023 ASB patient educator Sean (accompanied by caregiver/wife Robin) shared his journey with hereditary ATTR amyloidosis at the NORD Students for Rare Summit in Washington DC. These student leaders from medical schools across the U.S. had the special opportunity to learn about hereditary amyloidosis and the patient experience through Sean’s story.