Amyloidosis Research Consortium

06/04/2026

This month's webinar features Dr. Sascha Tuchman, hematologist and Director of the Multiple Myeloma and Amyloidosis Program at UNC at Chapel Hill.

He'll cover what light chain ( ) is, the diagnostic journey, the treatment options available today, and where the field is heading next. He'll also share what he's most excited about right now, followed by a live Q&A.

Join us on 6/26 at Noon ET: https://us02web.zoom.us/webinar/register/3917805899791/WN_WAzt4xr0SFSNck_L2shREQ

05/18/2026

It took 12 years for Johnny Boatman to learn he had . By then, his disease had progressed so far he needed a heart and kidney transplant to live.

He's sharing his story because awareness and early diagnosis can save your life.

Join ARC's second webinar with patients, a gene carrier, a caregiver, and a mental health provider. Hear their stories and know those impacted by V122I amyloidosis aren't alone.

Webinar | May 19 | 7 PM ET
Register today: https://us02web.zoom.us/webinar/register/9017788627609/WN_ESAvHW-5SPaAx8UIUjAHVw

Anyone With A heart

05/15/2026

Webinar | May 19 | 7 PM ET

A diagnosis doesn't only affect your health. It touches your family, your sense of the future, and emotions that are hard to put into words.

If you've been impacted by this disease, you aren't alone. ARC's second webinar in the V122I series brings together a mental health provider, patients, a gene carrier, and a caregiver to talk honestly about fear, grief, family communication, and what has helped.

If you've been diagnosed, recently tested, or are supporting someone who has, this session is for you.

Register Today: https://us02web.zoom.us/webinar/register/9017788627609/WN_ESAvHW-5SPaAx8UIUjAHVw

05/13/2026

On May 20 at Noon ET, in recognition of Mental Health Awareness Month, join ARC and Clinical Psychologist Rosalind Kalb, PhD, for a discussion on navigating the many emotions that can arise with an amyloidosis diagnosis and throughout the journey of living with the disease.

Register today: https://us02web.zoom.us/webinar/register/3017786970147/WN_Q2WhNjLvSpa1-a9mVYCT7w

05/07/2026

One of the hardest parts of cardiac is getting diagnosed. On average, patients wait 2 to 4 years from first symptoms to an accurate diagnosis, largely because there's no single, non-invasive test that can reliably detect it.

That may be changing. Bayer just announced that an investigational PET scan imaging agent called iodine 124 evuzamitide succeeded in a Phase III clinical trial, showing it can accurately identify or rule out cardiac amyloidosis in a single scan. It covers both and subtypes and may help track changes in amyloid burden in the heart over time.

This is still investigational and not yet approved, but Bayer plans to submit for regulatory review. Earlier diagnosis means earlier treatment, and that matters enormously in this disease.

Full press release:

Not intended for UK MediaInvestigational PET tracer iodine 124 evuzamitide from Bayer met primary endpoints in Phase III study in patients suspected to have cardiac amyloidosisThe Phase III REVEAL study met its primary endpoints demonstrating sensitivity and specificity of iodine 124 evuzamitide (I....

05/04/2026

For this May, we're sharing Suri Harish's story.

In 2006, Suri was diagnosed with amyloidosis with associated multiple myeloma and told he had two years to live. He's now 80.

Over the past two decades, he's moved through four phases reacting to and processing his diagnosis and its impact on his life. Rare disease doesn't just affect the body. For patients, the psychological weight is real and not always discussed as much as it should be.

Read Suri's journey: https://arci.org/a-mental-journey-what-20-years-with-amyloidosis-taught-one-patient-about-life/

If you or someone you know needs support after an amyloidosis diagnosis, our helpline is available at [email protected] or (617) 467-5170.

May is Mental Health Awareness Month. For those living with amyloidosis, the psychological toll of a rare diagnosis is intense, yet often goes unnamed. The following story is about surviving a disease for two decades, as well as a map of spiritual and mental evolution.

04/21/2026

Tisha Downing pursued genetic testing on her own and discovered she carries the variant. That moment brought clarity, validation, and a path forward.

Too many people living with don't know what genetic testing could mean for them and their families.

Join ARC on April 23 at 7 PM ET for the "Our Story" webinar on living with V122I hereditary ATTR amyloidosis. Amyloidosis specialists and a genetic counselor will cover diagnosis, genetic risk, and current treatment approaches. The event includes a patient perspective and live Q&A.

Open to patients, gene carriers, caregivers, and anyone considering genetic testing. Come to learn, ask questions, and feel less alone.

Register Today: https://us02web.zoom.us/webinar/register/1117757504537/WN_CRy2Wb5cT5uWfadAXt9yoQ

04/20/2026

This Thursday, April 23 at 7 PM ET ARC is hosting a free webinar on (a gene variant carried by roughly 1 in 25 Black Americans).

Amyloidosis specialists and a genetic counselor will cover diagnosis, genetic risk, early warning signs, and current treatment options. A patient perspective and live Q&A are included.

Open to patients, gene carriers, caregivers, family members, healthcare professionals, and anyone considering genetic testing.

Register Today: https://us02web.zoom.us/webinar/register/8017757504583/WN_CRy2Wb5cT5uWfadAXt9yoQ

04/17/2026

AL is a serious disease. However, many patients benefit from current therapies, with their lives improved and prolonged, often for many years.

Learn more about the current treatment options for the disease:

Understand the latest information about current types of AL amyloidosis treatments and different options to consider. This booklet is ...

04/16/2026

1 in 25 African Americans carry the gene variant for hereditary , but many have never heard the word.

That's why ARC is hosting the "Our Story" webinar on April 23 at 7 PM ET.

Join ARC, amyloidosis specialists, and a genetic counselor as we discuss diagnosis, genetic risk, and current treatment approaches.

The event will also include a patient perspective and live Q&A. Come to learn, ask questions, and feel less alone!

Register today: https://us02web.zoom.us/webinar/register/1117757504537/WN_CRy2Wb5cT5uWfadAXt9yoQ