–Alicia, living with AHP

Resources

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, developed by Alnylam. 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 the management of AHP.

Brochure with information about acute hepatic porphyria

ACUTE HEPATIC PORPHYRIA BROCHURE

This reader-friendly brochure developed by Alnylam takes you step by step through what AHP is, its signs and symptoms, diagnosis, and how to live with AHP.

Download PDF

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

Person diagnosed with acute hepatic porphyria

Seek information and support

British Porphyria Association Logo

The British Porphyria Association (BPA) is a national charity that supports patients and works to improve overall understanding of porphyria and how it affects affect lives of patients.

Visit the British Porphyria Association to learn more.

British Porphyria Association Logo

The Global Porphyria Advocacy Coalition (GPAC) operates as an umbrella organization for national porphyria patient advocacy organizations, representing all types of porphyria

Visit the Global Porphyria Advocacy Coalition to learn more.