5 of the Top Support Organizations for ATTR-CM

If you have ATTR-CM, you may benefit from additional support beyond what your doctors provide. Transthyretin cardiac amyloidosis (ATTR-CM), an incurable condition that involves a buildup of irregular protein clusters in your heart, can truly affect your quality of life. Increasingly difficult symptoms such as shortness of breath, irregular heartbeat, and fatigue may challenge your independence and resiliency.

If you need extra help, several support organizations dedicated to people with ATTR-CM can provide resources and a chance to connect with other people with the condition. You can learn more about treatment options, locations of treatment centers and the most experienced doctors, how to find financial assistance, and tips and tricks to alleviate symptoms, says Paula Schmitt, who is based in Georgia and is the executive director of Amyloidosis Support Groups.

Amyloidosis Support Groups

Amyloidosis Support Groups connect people with ATTR-CM with support systems in their state. The nonprofit’s goal is to educate and empower patients to have a better understanding of their disease, diagnostic testing procedures, treatments, and financial and insurance assistance, Schmitt says.

“Education can help patients feel more informed and confident when communicating with their doctors about their disease and treatments,” she says. “Informed patients are more likely to communicate effectively with their physicians about their questions or concerns and actively participate in their treatment plans.”

The organization provides information on eligibility for free genetic counseling and testing, which can help people with ATTR-CM understand if their condition is genetic, which can guide their doctors toward the most helpful treatment.

The group compiles pharmaceutical companies’ assistance programs and connects users to foundations that can help pay out-of-pocket expenses for medications.

Amyloidosis Support Groups meet in-person in more than 30 U.S. cities. The organization has an in-person conference every other year for hundreds of patients and top doctors who specialize in ATTR-CM. It hosts several Zoom webinars each year that you can watch on its YouTube channel.

The organization also has a Facebook group dedicated to ATTR-CM caregivers and their needs.

“Caregivers often have to take time off from work to get their loved ones back and forth to doctors’ appointments or testing,” Schmitt says. “Adult children may become caregivers to their parents, which can be especially difficult if they also have the disease.”

To stay up-to-date, contact the Amyloidosis Support Groups at info@amyloidosissupport.org.

Amyloidosis Foundation

The Amyloidosis Foundation hosts regular webinars on topics such as clinical trials and how to cope with ATTR-CM challenges.

The nonprofit’s goals are to empower patients, educate medical professionals, raise awareness for earlier diagnosis, and provide research grants for all types of systemic amyloidosis. It provides information on support groups, treatment centers, and resources for veterans.

The Amyloidosis Foundation also offers advocates several ways to get involved, including matching gifts from employers, hosting an event, or creating Facebook fundraisers.

Stay up-to-date by signing up for the Amyloidosis Foundation newsletter.

Amyloidosis Research Consortium

The Amyloidosis Research Consortium works with industry, government, and education partners to promote advances in ATTR-CM research and treatment. It builds programs to help doctors diagnose ATTR-CM properly and quickly. The group also works to advance research, engage with policymakers to make treatment more accessible, and support and educate people with ATTR-CM.

The nonprofit organization hosts conferences, webinars, fundraisers, and opportunities to get involved as an advocate. Its My Amyloidosis Pathfinder tool can help you find personalized treatment centers and clinical trials.

“There are many clinical trials that are active, so it’s good for a patient to know if that’s an opportunity they want to pursue,” says Ronald Witteles, MD, a cardiologist and a professor of medicine at Stanford Medicine in California.

On the Amyloidosis Research Consortium’s website, you can sign up to participate in surveys, focus groups, patient panels, advocacy opportunities, and more.

Stay up-to-date by signing up for the Amyloidosis Research Consortium newsletter.

Voices for the Heart

Created by Pfizer, Voices for the Heart is designed to share the stories of people with ATTR-CM and to build awareness around them. It notes that people who are Black are more likely to develop the TTR gene mutation that is associated with ATTR-CM.

Voices for the Heart’s events bring together doctors, community leaders, and others to share information about ATTR-CM and how it impacts various communities. The organization also provides downloadable resources on hereditary ATTR-CM, patient survey results, and patient stories.

American Heart Association

The American Heart Association Support Network community is designed to help people living with heart conditions find emotional support. Though ATTR-CM is a rarer condition that isn’t a specific focus of the group, people with ATTR-CM (or their caregivers) may still find relevant connections, especially, as so many of symptoms and challenges overlap with those of other heart conditions.

The support network is part of the larger American Heart Association organization, which was founded in 1924 and is now the nation’s oldest and largest voluntary organization for heart disease.

You can register here for full, free network access, which includes resources for heart disease and caregiving.

The Takeaway

Support organizations can help people with ATTR-CM identify treatment options, find experienced doctors, get financial assistance, and connect with others who are navigating the condition.
Some ATTR-CM support groups offer webinars, in-person meetings, and newsletters.
In addition to helping people with ATTR-CM, support groups also have resources for caregivers and people interested in advocacy related to the heart condition.