Speaking with your healthcare professional about hereditary ATTR (hATTR) amyloidosis

Learning about this condition and your family health history can help you have a conversation with your healthcare professional


The path to diagnosis

Symptoms of hATTR amyloidosis may be similar to those of other conditions.

The more educated you are about the symptoms, the better prepared you can be to speak with your healthcare professional about a possible diagnosis.

It’s important that you discuss all the symptoms you’re experiencing because your healthcare professional may choose to refer you to a specialist who could prescribe further tests to help make a diagnosis.

The more we can educate our doctors, the more they can help these new patients learn about this disease.—Ron Sr.
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Conditions with symptoms that may appear to be similar to those of hATTR amyloidosis

This list may not be all-inclusive.

Conditions associated with polyneuropathy
Chronic inflammatory demyelinating polyneuropathy (CIDP)
Amyotrophic lateral sclerosis (ALS)
Motor polyradiculoneuropathy
Carpal tunnel syndrome
Idiopathic polyneuropathy
Paraneoplastic neuropathy
Motor neuron disease
Charcot-Marie-Tooth disease
Alcoholic neuropathy
Diabetic neuropathy
Amyloid light (AL) chain amyloidosis
Amyloid A (AA) amyloidosis

Conditions associated with cardiomyopathy
Hypertensive heart disease
Hypertrophic cardiomyopathy
Fabry disease
Amyloid light (AL) chain amyloidosis

Certain groups of symptoms should cause your healthcare professional to suspect hATTR amyloidosis.

If you experience symptoms and are aware of a family history, speak to your healthcare professional—he or she can conduct an evaluation and determine the right plan of action. Because the condition affects different parts of the body, it may be necessary for your healthcare professional to refer you to a specialist who is familiar with hATTR amyloidosis.

Download the Healthcare Discussion Guide, a resource you can use to help you talk to your doctor about hATTR amyloidosis.

Genetic counseling

Genetic counseling can help you understand your chances of developing the condition as well as to make you familiar with the testing process and implications of a diagnosis. Genetic counselors can also help you understand the issues related to genetic testing—from personal risk to possible insurance impact, and can help you determine if a genetic test may be right for you.

A genetic test will tell a person if he or she carries a mutation in the TTR gene associated with hATTR amyloidosis. Once a gene mutation is identified, family members of an affected individual can use this information to help determine their own risk.

Alnylam Act

Alnylam is sponsoring no-charge third-party genetic testing and counseling for individuals who may carry a gene mutation known to be associated with hereditary ATTR (hATTR) amyloidosis. The Alnylam Act™ program was created to reduce barriers to genetic testing and counseling to help people and their healthcare providers make more informed decisions about their health.

The genetic testing service is available in the United States and Canada and the genetic counseling service is available in the United States.

Learn more about Alnylam Act.™

Sign up for updates about hATTR amyloidosis from Alnylam.


Learn some tips and strategies for talking to your family about hATTR amyloidosis »

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