Alnylam Sponsored Third-Party Genetic Testing and Counseling Programs Offered at No Charge
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™ (formerly known as Alnylam Assist) program was created to potentially enable diagnosis and to provide genetic counseling to help people make more informed decisions about their health. These services are available only in the United States. Alnylam hopes to implement certain aspects of Alnylam Act more broadly across its pipeline of novel investigational therapies in development.
While Alnylam provides financial support for this program, all tests and services are performed by independent third parties. At no time does Alnylam receive patient identifiable information. Alnylam receives contact information for health care providers who sign up for this program.
How Does Genetic Testing Work?
Genetic testing will tell you if you carry a mutation in the TTR gene associated with hATTR amyloidosis. We encourage you to speak with your doctor and/or a genetic counselor about the benefits, risks, and limitations of genetic testing as well as the appropriateness of genetic testing for you.
For you to get free genetic testing, your health care provider (HCP) will need to sign up for the program. Your HCP can sign up with Invitae, the independent vendor who provides this service, at www.invitae.com/alnylam-act.
After enrollment is complete, your doctor will take a blood sample or saliva sample from you and submit it for testing. Results are delivered directly to your HCP who will share them with you.
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 diseases. Genetic counseling is available 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 vendor who provides this service.
To schedule free genetic counseling, call 1.888.475.3128 and reference the Alnylam Act program. You will also be asked to provide your doctor’s name, address, phone and fax number as a detailed summary report will be sent directly to him/her following your genetic counseling session.
For assistance with genetic testing, call Invitae at 1.800.436.3037
For assistance with genetic counseling, call InformedDNA at 1.888.475.3128