Where to find ATTR-CM support and resources

Written by Mary Chapman | Last updated March 13, 2026
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This is part of an advocacy series that honors Amyloidosis Awareness Month. To read more in this series, published throughout the month of March, click here.

Living with transthyretin amyloid cardiomyopathy (ATTR-CM) can sometimes feel isolating and overwhelming. 

You may have friends or loved ones who struggle to understand what you’re going through. As fatigue and other symptoms progress, you might find yourself withdrawing from activities you once enjoyed. And the many medical appointments can take a toll.

Joining a patient support group may help. While every ATTR-CM journey is different, connecting with people who “get” what you’re experiencing can offer emotional and practical support and may improve your quality of life. 

Benefits of support groups

Various organizations and programs offer support and connection for people with ATTR-CM and their caregivers. They may:

  • provide a safe place to share feelings
  • offer coping strategies and insights about treatments 
  • provide resources about ATTR-CM
  • help you make more informed decisions about your future
  • encourage you to stay on track with treatment plans
  • foster a sense of community and hope

Finding ATTR-CM support

You can find ATTR-CM support both online and in person. For example, Amyloidosis Support Groups — an organization focused on support and awareness for all types of amyloidosis — offers both in-person and virtual meetings across the U.S. 

The Amyloidosis Research Consortium also offers the PEER Link program, which connects patients and caregivers with a trained peer mentor for one-on-one support.

The Amyloidosis Foundation, which helps fund amyloidosis research, partners with Smart Patients — an online community for people with amyloidosis and their caregivers. The foundation also offers in-person support groups in several states and countries.

Social media can also be a place to find ATTR-CM support. Platforms such as Facebook or Reddit host private groups where patients and caregivers connect and share experiences.

You can also ask your amyloidosis specialist or cardiologist about local support groups.

ATTR-CM educational resources

In addition to connecting with peers, staying informed about ATTR-CM treatments and other disease information may help you feel more prepared as the condition progresses. To stay informed, consider resources such as: 

  • the Amyloidosis Research Consortium, which works to advance amyloidosis treatment and awareness and offers educational resources and a tool that can help match patients with treatment centers and clinical trials
  • Amyloidosis News Today, which shares the latest news and information about ATTR-CM
  • the Amyloidosis Foundation, which offers a resource page with webinars, videos, and information about topics such as exercise, travel, clinical trials, and treatment centers 
  • the National Minority Quality Forum, a nonprofit that works to advance health equity and provides an online platform designed to support Black Americans living with transthyretin amyloid cardiomyopathy

Ultimately, whether through a local meeting, an online community, or a one-on-one peer program, support can make a meaningful difference when living with ATTR-CM.

Having access to reliable information and people who understand what you’re going through may help reduce feelings of isolation and give you greater confidence as you continue managing life with ATTR-CM.

Amyloidosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.


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