Alnylam Sponsored Free Third-Party Genetic Testing and Counseling Programs
Alnylam is sponsoring free, 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 increase diagnosis rates 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.
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 doctor will need to sign up for the program. Your doctor can sign up by completing this form and emailing it to TTRSupport@alnylam.com or faxing it to 1.617.649.8707.
After enrollment is complete, your doctor will take a blood sample from you and submit it for testing. Results are delivered directly to your doctor 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. Alternatively, your doctor can refer you for genetic counseling through the program.
If you have any questions about Alnylam Act, please email TTRSupport@alnylam.com.