GENETIC TESTING AND COUNSELING PROGRAM

Alnylam Act®

Alnylam Act® is a sponsored, no-charge, third-party genetic testing and counseling program for patients with a family history or suspected diagnosis of hereditary ATTR (hATTR) amyloidosis, acute hepatic porphyria, or primary hyperoxaluria type 1.

The Alnylam Act® program was developed to reduce barriers to genetic testing and counseling, and to help people make more informed decisions about their health. Through the Alnylam Act® program, genetic testing and counseling is offered at no charge to individuals who meet the eligibility criteria. Genetic testing is available in the United States and certain other countries. Genetic counseling is only available in the U.S.

Genetic Testing and Counseling for the Following Conditions

Hereditary ATTR (hATTR) amyloidosis

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hATTR amyloidosis is a progressive, debilitating, and fatal familial disease. hATTR amyloidosis is an autosomal dominant disease caused by a variant in the transthyretin (TTR) gene that results in misfolded TTR proteins accumulating as amyloid deposits in multiple sites including the nerves, heart, and gastrointestinal (GI) tract.

Want more info?

 

For Patients:

Download and share our brochure for patients on Alnylam Act® for hATTR amyloidosis.

 

For Healthcare Professionals:

Download and share our brochure for healthcare professionals on Alnylam Act® for hATTR amyloidosis.

Acute hepatic porphyria (AHP)

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AHP is a family of rare genetic diseases characterized by potentially life-threatening attacks, and for some people, chronic debilitating symptoms that negatively impact daily function and quality of life. Some types of AHP can have symptoms that affect the skin—specifically blistering skin lesions on sun-exposed areas. Skin symptoms can be present with or without attacks.
 
4 types of AHP—acute intermittent porphyria (AIP), variegate porphyria (VP), hereditary coproporphyria (HCP), and ALAD-deficient porphyria (ADP)—are characterized by acute, potentially life-threatening attacks and in some patients, chronic debilitating symptoms that negatively impact patients’ quality of life.

Want more info?

 

For Patients:

Download and share our brochure for patients on Alnylam Act® for acute hepatic porphyria.

 

For Healthcare Professionals:

Download and share our brochure for healthcare professionals on Alnylam Act® for acute hepatic porphyria.

Primary hyperoxaluria type 1 (PH1)

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PH1 is a progressive genetic disease that is potentially life-threatening and often presents with calcium oxalate kidney stones. Calcium oxalate crystals are insoluble and toxic and lead to serious disease manifestations, including recurrent kidney stones, nephrocalcinosis, progressive renal failure, and multiorgan damage from systemic oxalosis once the disease advances.

Want more info?

 

For Patients:

Download and share our brochure for patients on Alnylam Act® for primary hyperoxaluria type 1.

 

For Healthcare Professionals:

Download and share our brochure for healthcare professionals on Alnylam Act® for primary hyperoxaluria type 1.

How Genetic Testing Works

Alnylam Act® provides genetic testing that can identify DNA 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 someone’s chance of developing or passing on a genetic condition.

Step 1:

Select a Condition

Select one of the conditions ABOVE and determine your patient’s eligibility.

Step 2:

Start Your Order

Order a genetic test to confirm if your patient has or is at risk of developing a certain genetic condition.

Step 3:

Submit Patient
Sample

Collect and submit a sample using one of Invitae’s test kits.

Step 4:

Review Results

Receive results in 10-21 calendar days, on average.

For assistance with genetic testing, please visit Invitae or call 1-800-436-3037.

How Genetic Counseling Works

Genetic counseling is a service available to patients in the U.S. that provides information and support for patients 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.

Refer Your Patient for Genetic Counseling at Any Time
  • Instruct your patient to call InformedDNA at 1-888-475-3128 to schedule an appointment
  • The patient may seek genetic counseling sessions throughout the process, and counseling is available before, during, and after genetic testing
Prepare Your Patient for the Appointment

The patient will need to reference the Alnylam Act® program and provide your contact information (name, address, phone number, and fax number) when scheduling the appointment.

Receive Results

A detailed summary report of your patient’s genetic counseling session will be delivered to you via fax.

We’re Committed to Privacy

While the program is sponsored by Alnylam Pharmaceuticals, all services are performed by independent third parties. Genetic counseling is only available in the United States for patients, physicians, or payers. The Alnylam Act® program was created to provide access to genetic testing and counseling to patients as a way 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 uses healthcare professional contact information for research and commercial purposes
  • Genetic testing is available in the U.S. and certain other countries. Genetic counseling is only available in the U.S.
  • Healthcare professionals or patients who use this program have no obligation to recommend, purchase, order, prescribe, promote, administer, use, or support any Alnylam product
  • No patients, healthcare professionals, or payers, including government payers, are billed for this program

CLINICAL TRIALS

Find out about studies evaluating the safety and effectiveness of our treatment options.

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THE SCIENCE OF RNAI

RNAi has helped create a new approach to developing medicine for genetic diseases.

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