There are several associations and organizations providing support for people affected by transthyretin amyloid cardiomyopathy (ATTR-CM), a rare type of heart disease that can be lethal.
Amyloidosis Foundation
The Amyloidosis Foundation supports patients and families and promotes research, education and awareness about amyloidosis, which is the buildup of amyloid, a protein, in bodily organs.
The foundation provides a range of services for patients, including accurate, up-to-date information, and research grants for all types of systemic amyloidosis, including ATTR-CM, for researchers.
The Amyloidosis Research Consortium
The Amyloidosis Research Consortium (ARC) is a nonprofit organization that works to drive advances in the awareness, science and treatment of amyloid diseases, including ATTR-CM.
The group aims to accelerate the diagnosis of amyloid diseases, advance research in the field, improve the understanding of the diseases, speed the development of new therapies and support patients with educational tools and by ensuring they have access to the best quality of care.
The International Society of Amyloidosis
The International Society of Amyloidosis (ISA) is a nonprofit organization comprising scientists and physicians who conduct research on, teach about, or practice in the field of amyloidosis.
The society aims to promote research, education, clinical studies, conferences and symposia on all aspects of amyloidosis around the world.
The American Heart Association
The American Heart Association (AHA), founded by six cardiologists in 1924, is the oldest and largest voluntary organization dedicated to fighting heart disease in the US.
The foundation’s website has a section dedicated to ATTR-CM, which provides information about the disease, its symptoms, its diagnosis and its treatment.
The foundation also offers professional memberships, publishes guidelines and statements and organizes meetings and educational activities about heart disease.
The World Heart Federation
The World Heart Federation is a nongovernmental organization based in Geneva, Switzerland, formed in 1978 to help prevent cardiovascular disease.
The federation’s mission is to connect, lead and inspire the cardiovascular community, translate science into policy and stimulate and catalyze the exchange of knowledge across borders via the World Congress of Cardiology and the Emerging Leaders Program.
The federation has a wide range of resources about ATTR-CM, including expert advice and patient stories.
The Heart Failure Society of America
The Heart Failure Society of America is an organization comprising physicians, scientists, nurses, nurse practitioners, pharmacists and patients, who work together to improve and expand care for heart failure through collaboration, education, research, innovation and advocacy.
Amyloidosis Support Groups
Amyloidosis Support Groups is a nonprofit corporation founded in May 2005 that supports patients with amyloidosis and their caregivers and former caregivers.
Its goal is to set up and help maintain peer groups, amyloidosis support group meetings and webinars to help educate and empower patients with amyloidosis and their loved ones.
Their website contains information about amyloidosis treatment centers, webinars, meetings, awareness, patient resources, clinical trials, the amyloidosis patient registry and support groups throughout the US.
Reviewed by Kyle Habet, M.D., on November 18, 2024.