Alnylam Act®: Third-Party Genetic Testing and Counseling Programs Offered at No Charge

The Alnylam Act® program was developed to reduce barriers to genetic testing and counseling 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 receives contact information for healthcare professionals who use this program. Genetic testing is available in the U.S. and Canada. Genetic counseling is only available in the U.S. Healthcare professionals who use this program have no obligation to recommend, purchase, order, prescribe, promote, administer, use or support any Alnylam product.

How Does Genetic Testing Work?

This program provides gene testing, which is a type of genetic testing that identifies DNA changes (mutations) that may lead to a genetic condition. The results of a genetic test can confirm or rule out a suspected genetic disease or help determine a person’s chance of developing or passing on a genetic condition.

For an individual to get free genetic testing, his or her doctor will need to sign up for the program. A healthcare professional (HCP) can sign up with Invitae, the independent vendor who provides this service, at:

After enrollment is complete, a doctor will take a blood or saliva sample from the interested party and submit it for testing. Results are delivered directly to the testing HCP within 2-3 weeks, who will then share them with the tested individual.

For assistance with genetic testing, call Invitae at: 1.888.436.3037

How Does Genetic Counseling Work?

Genetic counseling is a service that provides information and support to people who have, or may be at risk for, genetic conditions. Genetic counselors are trained healthcare professionals who can discuss genetics, inheritance, and disease risk as well as the benefits, limitations, and potential implications of genetic testing. Genetic counseling can be performed before, during, or after genetic testing.

Individuals who have a diagnosis of hATTR amyloidosis, have a known family history of hATTR amyloidosis, or who are undergoing a clinical evaluation with a doctor for hATTR amyloidosis, may schedule a telephone-based genetic counseling session directly with InformedDNA, the independent provider of this service.

To schedule free genetic counseling, call 1.888.475.3128 and reference the Alnylam Act® program. Callers will also be asked to provide a doctor’s name, address, phone and fax number as a detailed summary report will be sent directly to him/her following the genetic counseling session.

For assistance with genetic counseling, call InformedDNA at: 1.888.475.3128

Are symptoms and family history leading you to suspect hATTR amyloidosis?Your patient may be eligible for Alnylam Act®, a genetic testing and counseling program that is made available at no charge.
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