Amyloidosis Research Consortium

09/05/2026

Don’t miss this upcoming amyloidosis program in Boston!
Hosted by Northeastern University and the Society for Participatory Medicine, The Amyloidosis Patient Journey: From New Diagnosis to Patient Empowerment will bring together patients, caregivers, advocates, and healthcare professionals for conversations about diagnosis, care, clinical trials, health equity, and living well with amyloidosis.

ARC will be part of the program, moderating the Patient and Caregiver Panel and presenting “Finding Your Best Care.”

If you’re attending, stop by the ARC booth too. We’ll be sharing amyloidosis resources for patients, caregivers, and healthcare professionals.
Saturday, September 19, 2026
Northeastern University, Boston
8:30 AM–2:00 PM

Learn more and register: https://participatorymedicine.org/conference/

09/03/2026

Living with amyloidosis can feel isolating. Support groups offer a place to connect, share experiences, ask questions, and learn from others who understand.

Dena Heath, a facilitator with the Northern California Amyloidosis Support Groups, helps create those opportunities for patients and caregivers. Building on that work, Dena and other area support group facilitators recently partnered with the Stanford University Amyloidosis Center to bring patients, caregivers, clinicians, and researchers together to help bridge the gap between science and lived experience.

Click the link below to read more about the gathering and the importance of community and support throughout the amyloidosis journey:

A diagnosis of amyloidosis rarely arrives quietly. It brings with it a number of appointments, decisions, and emotions ...

09/01/2026

ARC’s 2026 Amyloidosis Community Survey is now open!

For the fifth year, we’re asking people living with amyloidosis and caregivers to share their experiences with diagnosis, treatment, care and support. Your responses help us understand how these experiences are changing over time and where needs remain.
Whether this is your first time taking the survey or you’ve participated before, we want to hear from you.

The survey takes about 25–30 minutes, depending on which questions apply to you. Your responses will be kept confidential and will not be connected to your identity.

Take the survey: https://arci.org/survey2026/

Deadline: October 23rd, 2026

ARC is conducting an online survey of patients and caregivers for individuals living with amyloidosis to collect data and information on ...

08/24/2026

This Thursday (8/27) at Noon ET, Jill Stratford Waldron, MSN, GNP will discuss how to prepare and age well with diagnosis of !

What is the difference between "normal aging" and accelerated aging? Find out at this month's webinar: https://us02web.zoom.us/webinar/register/6817875859805/WN_GxACkxc8TRmIvQefDwxwQw

07/10/2026

Randy's story sounds familiar to many people living with . His willingness to share his experiences and raise awareness is an important part of the work many are doing to diagnose this disease earlier and extend and improve the lives of amyloidosis patients everywhere.

07/09/2026

𝑼𝒑𝒅𝒂𝒕𝒆 𝒐𝒏 𝑪𝑨𝑹𝑫𝑰𝑶-𝑻𝑻𝑹𝒂𝒏𝒔𝒇𝒐𝒓𝒎 (𝒆𝒑𝒍𝒐𝒏𝒕𝒆𝒓𝒔𝒆𝒏):
AstraZeneca and Ionis Pharmaceuticals, Inc. released results today from CARDIO-TTRansform, a Phase III trial of eplontersen in . Here's what we know so far.

𝗔𝗯𝗼𝘂𝘁 𝘁𝗵𝗲 𝘀𝘁𝘂𝗱𝘆: Over 1,400 ATTR-CM patients were enrolled to test whether adding eplontersen, a monthly injectable, to standard care would reduce cardiovascular death and recurrent heart-related events compared to placebo.

𝗪𝗵𝗮𝘁 𝘄𝗮𝘀 𝗳𝗼𝘂𝗻𝗱: The study's main goal was not met — overall, adding eplontersen did not significantly reduce the combined rate of cardiovascular death and heart-related events.

𝗦𝗼𝗺𝗲 𝗲𝗻𝗰𝗼𝘂𝗿𝗮𝗴𝗶𝗻𝗴 𝘀𝗶𝗴𝗻𝗮𝗹𝘀 𝗲𝗺𝗲𝗿𝗴𝗲𝗱 𝗲𝗹𝘀𝗲𝘄𝗵𝗲𝗿𝗲:
• Eplontersen produced large, sustained reductions in TTR protein levels, consistent with how this class of drugs is expected to work.

• Across secondary measures — including imaging and biomarker analyses — results generally favored eplontersen over placebo.

• In patients taking eplontersen without a stabilizer (like tafamidis), there were fewer heart-related events — described as nominally significant, meaning it's an early signal, not a confirmed result.

• Patients already on stabilizer therapy showed no added benefit from eplontersen.

Safety data were consistent with prior studies, with no new safety concerns identified.

𝗪𝗵𝗮𝘁 𝘄𝗲 𝗱𝗼𝗻'𝘁 𝗸𝗻𝗼𝘄 𝘆𝗲𝘁: Full data haven't been released yet. AstraZeneca and Ionis will present complete results at the European Society of Cardiology Congress in August 2026. Until then, it's unclear why the main goal wasn't met despite these favorable secondary findings, and what this means for treatment going forward.

𝗙𝗼𝗿 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀: This is a research update, not a treatment recommendation. These results concern eplontersen's investigational use in ATTR-CM only. Its approved use for hereditary ATTR polyneuropathy (ATTRv-PN) is unaffected.

We'll share more once full data are presented in August.
Source: AstraZeneca and Ionis press releases, July 9, 2026
https://ir.ionis.com/news-releases/news-release-details/update-cardio-ttransform-phase-3-trial-eplontersen-adults

06/18/2026

This past weekend, ARC joined the Conference at Piedmont Atlanta Hospital, a true collaboration across the area's health systems. We heard from and spoke with healthcare professionals from health systems across the region.

The conversations centered on seeing ideas turn into action. Attendees not only talked about the challenges that remain in diagnosis, but also about the innovative ways healthcare teams are adapting their systems to improve recognition, streamline pathways to care, and connect patients to appropriate evaluation sooner.

It is good to see how organizations are moving beyond awareness and implementing practical approaches that help translate knowledge into meaningful change for patients. Collaboration, shared learning, and a willingness to update old processes are what keep this field moving.

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