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GivingTuesday 12/2/2025

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2025 Fall Newsletter

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AL Amyloidosis

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Amyloidosis Awareness Items

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Hereditary Amyloidosis

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The Amyloidosis Channel

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Patient Education Activity

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What is Amyloidosis?

AMYLOIDOSIS is a term that represents several different types of diseases where an abnormal protein called amyloid is produced. These amyloid protein fibers can attach and deposit into organs, tissues, nerves, and other places in the body. When that happens, normal function of the area can be affected. As the amyloid protein increases, health problems and organ damage may occur. “OSIS” means increased, or an abnormal, supply of AMYLOID protein.

Most amyloidosis diseases have different treatments; therefore, the correct diagnosis is extremely important.

Featured Patient Story

Making a Difference

Mackenzie Boedicker

In April of 2017, I was diagnosed at the age of 23 with AL amyloidosis. I noticed a lump in the back of my throat that had been increasing in size. I saw an ENT who incorrectly diagnosed the lump as seasonal allergies. A second ENT eventually did a biopsy of the lump and the results indicated that the tissue...
Read the Full Story

Latest Headlines

Efficacy of Acoramidis in Wild-Type and Variant Transthyretin Amyloid CardiomyopathyResults From ATTRibute-CM and Its Open-Label Extension

November 12, 2025

JAMA Cardiol

Published Online: November 8, 2025

Today at the AHA congress in New Orleans, BridgeBio presented data showing that acoramidis significantly reduces all-cause mortality (through month 42) in people living with hereditary ATTR-CM population, with specific benefit noted in those living with...

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Calendar & Upcoming Events

Webinar: Simple Digital Tools to Improve Your Patient Journey

When


November 19, 2025    

6:00 pm - 6:45 pm

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Webinar Session: Wednesday, November 19th, 2025 at 6 PM (ET) Zoom Meeting

(These sessions will not be recorded due to patient involvement and HIPAA laws)

To Register HERE

Simple Digital Tools to Improve Your Patient Journey

Speaker: Thomas Bartlett

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Webinar: End-of-Life Planning Made Simple

When


November 12, 2025    

6:00 pm - 6:45 pm

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Webinar Session: Wednesday, November 12th, 2025 at 6 PM (ET) Zoom Meeting

(These sessions will not be recorded due to patient involvement and HIPAA laws)

To Register HERE

End-of-Life Planning Made Simple: Choices That Bring Peace of Mind

Speaker: Dr. Stacey Goodman, Vanderbilt University

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Webinar: How Clinical Trials are Changing Amyloidosis Treatment

When


November 5, 2025    

6:00 pm - 6:45 pm

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Webinar Session: Wednesday, November 5th, 2025 at 6 PM (ET) Zoom Meeting

(These sessions will not be recorded due to patient involvement and HIPAA laws)

To Register HERE

How Clinical Trials are Changing Amyloidosis Treatment

Speaker: Dr. Rodney Falk, Cardiologist Brigham Women’s Hospital

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Amyloidosis Videos

This section features a collection of informative videos that provide valuable insights into amyloidosis. Watch expert-led content on various aspects of the condition, from diagnosis to treatment, to deepen your understanding and stay informed.

Featured Product

Gray Run Shirt

FLASH SALE:  Get this shirt for $15.00 while supplies last! Wear our shirt and increase amyloidosis awareness in your community!  50% cotton, 50% polyester Color: Gray
$15.00
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Our Latest Webinar

The Changing Paradigm of Amyloidosis Treatment

Jeffrey Zonder, MD

Karmanos Cancer Institute, Detroit, MI

July 10, 2025

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