Alnylam Act® Primary Hyperoxaluria Type 1 (3 genes)

The Alnylam Act program is a sponsored genetic testing and counseling program for people with suspected Primary Hyperoxaluria Type 1 (PH1). It tests three genes associated with primary hyperoxaluria to help confirm a diagnosis, guide care decisions, and assess whether family members may also carry the genetic change. The program also includes access to genetic counseling so you can fully understand what results mean for you and your family.

Yes, the Alnylam Act program covers the full cost of genetic testing and genetic counseling for Primary Hyperoxaluria Type 1. There is no cost to you, your family, your doctor, or your insurance plan. The program's sponsor pays for everything, so you will never receive a bill for the test or counseling services.

The Alnylam Act PH1 test can be done using a simple blood draw, a saliva sample, or a buccal swab (a gentle swab of the inside of your cheek). Your healthcare provider will order a free sample collection kit, and the kit will include everything needed to collect and ship the sample. No special preparation is required on your part.

Results from the Alnylam Act Primary Hyperoxaluria Type 1 test are typically available within 2 to 3 weeks after the lab receives your sample. Your ordering healthcare provider will share the results with you, and genetic counseling is included at no cost to help you understand what the findings mean.

Yes, the Alnylam Act program includes genetic counseling at no cost. A genetic counselor can help you understand your test results, discuss what they mean for your health or your child's health, and talk through whether other family members should consider testing. This support is part of the program, so there is nothing extra to pay.

Identifying the specific genetic cause of Primary Hyperoxaluria Type 1 can help your doctor plan the most appropriate monitoring and treatment for you or your child. It can also reveal whether siblings or other relatives carry the same genetic change, which is important because early detection can make a meaningful difference. The Alnylam Act program makes this testing available at no cost so that families can get these answers without financial barriers.

Patients may qualify for Alnylam Act if they meet the program's eligibility criteria:

• You may qualify if you have a family history of Primary Hyperoxaluria (PH1) or your provider suspects PH1.
• Adults (18+) may be eligible with high urinary oxalate or high plasma oxalate levels.
• Children may qualify if they have kidney problems, including failure to thrive with reduced kidney function.
• Children may also qualify with kidney stones or nephrocalcinosis.
• Children may be eligible with elevated urinary or plasma oxalate.