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 in the US 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 healthcare professionals who sign up for this program.
How Does Genetic Testing Work?
Genetic testing tells an individual if he or she carries a mutation in the TTR gene associated with hATTR amyloidosis. We encourage affected people to speak with doctors and/or genetic counselors about the benefits, risks, and limitations of genetic testing as well as the appropriateness of genetic testing.
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: www.invitae.com/alnylam-act
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, who will then share them with the tested individual.
For assistance with genetic testing, call Invitae at: 1.888.475.3128
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 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