Resources

The resources below can help you connect with other people affected by hereditary ATTR (hATTR) amyloidosis and learn more about the condition.

Please use the language drop down menus below to download translated versions of select resources.

Downloads

Educational Resources

hATTR Amyloidosis Educational Brochure

A Closer Look at hATTR Amyloidosis

A detailed overview of hATTR amyloidosis

Download

hATTR Amyloidosis Caregiver Brochure

Caregiver Brochure

A guide with information and tips for those taking care of their loved ones

Download

Family Resources

hATTR Amyloidosis Family Discussion Guide

Family Discussion Guide

Tips for starting the conversation with your family and a list of resources for further education

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hATTR Amyloidosis Family Health Tree tool

Family Health Tree

A tool to help map your family history

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Genetic Counseling & Testing Guide

Genetic Counseling & Testing Guide

An overview of the genetic testing process for hATTR amyloidosis

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Doctor Discussion Resources

hATTR Amyloidosis Doctor Discussion Guide

Doctor Discussion Guide

Information and tips for talking to your doctor about hATTR amyloidosis

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hATTR Amyloidosis Symptoms Checklist & Tracker

Symptoms Checklist & Tracker

A tool to help you monitor and track your symptoms

Download

resource-type

Information and Support Groups

Genetic Testing Options

 

If your doctor thinks you may be at risk for hATTR amyloidosis, they may recommend you work with a genetic counselor. Genetic counselors are trained healthcare professionals who can help you and your family learn more about the condition, the chances of you and your family inheriting it, whether genetic testing is right for you, how testing works, and what may happen after a diagnosis.

A genetic test will determine whether a person carries a variant in the transthyretin (TTR) gene associated with hATTR amyloidosis. If a gene variant is identified, family members of an affected individual can use this information to help determine their own risk.

 

Alnylam Act® logo

Alnylam Pharmaceuticals sponsors no-charge, third-party genetic testing and counseling for individuals who may carry one of the 120 or more gene variants known to be associated with hATTR amyloidosis.

Learn more about Alnylam Act® »

The Alnylam Act® program was created to provide access to genetic testing and counseling to patients as a way to help people make more informed decisions about their health.

  • While Alnylam provides financial support for this program, tests and services are performed by independent third parties
  • Healthcare professionals must confirm that patients meet certain criteria to use the program
  • Alnylam receives de-identified patient data from this program, but at no time does Alnylam receive patient-identifiable information. Alnylam may use healthcare professional contact information for research purposes
  • Both genetic testing and genetic counseling are available in the US and Canada
  • Healthcare professionals or patients who use this program have no obligation to recommend, purchase, order, prescribe, promote, administer, use, or support any Alnylam product
  • No patients, healthcare professionals, or payers, including government payers, are billed for this program

 

Patient Stories