Stay informed with resources about AHP
There are a range of resources designed to help people understand acute hepatic porphyria (AHP) and handle the challenges of living with the disease. A great starting point is downloading a printable Doctor Discussion Guide. Once the Guide is downloaded, you can complete each section and then bring it to an upcoming doctor appointment. This can help start conversations about whether you should be tested for AHP.
LEARN ABOUT FAMILY GENETIC TESTING FOR AHP AND MAP YOUR FAMILY’S HISTORY
Knowledge of genetic risk of AHP may enable people to make informed decisions regarding lifestyle and medications with the intent to prevent attacks and complications of the disease. The following resources can help you learn more about the genetic risk of AHP, and how to talk with your family and doctor about genetic testing for AHP
I’m excited to continue advocating for my disease and helping spread the proper awareness whenever and wherever I can with my family and friends, while living my best life along the way.— Candace, living with AHP
Alnylam-sponsored third-party genetic testing for acute hepatic porphyria offered at no charge
The Alnylam Act® program was developed to reduce barriers to genetic testing 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 receives contact information for healthcare professionals who use this program. Genetic testing is available in the US and Canada. Healthcare professionals who use this program have no obligation to recommend, purchase, order, prescribe, promote, administer, use, or support any Alnylam product.
Your doctor must sign up for the program and confirm that you meet certain criteria in order for you to receive genetic screening at no charge.
This helpful brochure offers a review of AHP, genetic testing, and the Alnylam Act® program.