Resources

View or download helpful AHP-Related resources

Educational materials and resources have been created to provide you with a greater understanding of acute hepatic porphyria (AHP). These resources will help provide additional education on identification, testing, and management of patients with this debilitating disease.

 

These resources are not intended to replace the independent medical judgment of any healthcare professional and are for reference purposes only.

HEAR FROM THE AHP
COMMUNITY AND EXPERTS

The videos below are stories from real patients with AHP. Hearing their stories may help you further your understanding of the symptoms and trials your patients with AHP may face.


 

NICOLE’S LONG ROAD TO DIAGNOSIS

Nicole talks about her long journey to an AHP diagnosis, alongside Dr Angelika Erwin, a porphyria expert, who provides an overview of the disease, including symptoms and ways to test for AHP.

MEGAN’S UNPREDICTABLE REALITY

Megan, along with her mother and husband, discuss her struggles with the unpredictable nature of AHP symptoms and how it hinders many aspects of her life.

LEARN FROM A PANEL OF EXPERTS

Understanding Acute Hepatic Porphyria (AHP) is a series of videos produced in 2019, featuring a panel of multidisciplinary experts with first-hand knowledge of treating AHP.


 

DIAGNOSING AHP

Experts from multiple disciplines speak about what they look for when diagnosing AHP and how you can test for it.

IDENTIFYING MULTIPLE PATIENT ARCHETYPES WITH AHP

A panel of multidisciplinary experts discuss the basics of the disease and share their knowledge on the types, pathophysiology, and symptoms of acute hepatic porphyria.

AHP CASE STUDY

The AHP INTERACTIVE CASE STUDY includes:

  • A hypothetical AHP diagnosis
  • AHP signs and symptoms
  • Quick tests of your AHP knowledge vs other HCPs
Acute hepatic porphyria interactive case study
 

This series of learning modules lays the groundwork for understanding acute hepatic porphyria, recognizing symptoms, and gaining insight into how it may affect your patients. Modules can be viewed online and/or downloaded as PDFs.

Classification of acute hepatic porphyria

Module 01:
Classification of
Porphyria

Classification of acute hepatic porphyria

Module 1 Reviews:

  • 2 major categories of the rare genetic diseases classified as porphyria—AHP and photocutaneous porphyria
  • The prevalence of the most common types of AHP and precipitating factors of attacks
 
Pathophysiology of acute hepatic porphyria

Module 02:
Pathophysiology of Acute Hepatic Porphyria (AHP)

Pathophysiology of acute hepatic porphyria

Module 2 Reviews:

  • Evidence for the role of ALA (aminolevulinic acid) and PBG (porphobilinogen) in attacks
  • How attacks and, for some patients, chronic symptoms are associated with widespread neurologic lesions, leading to dysfunction across the autonomic, central, and peripheral nervous systems
 
Simplifying the diagnostic path of acute hepatic porphyria

Module 03:
Acute Hepatic Porphyria (AHP): Simplifying the Diagnostic Path

Simplifying the diagnostic path of acute hepatic porphyria

Module 3 Reviews:

  • The diagnostic challenges of AHP
  • Common AHP symptoms
  • How and why AHP can be easily misdiagnosed
  • Biochemical testing for AHP
  • Genetic testing
 
Patient burden of acute hepatic porphyria

Module 04:
The Patient Burden of Acute Hepatic Porphyria (AHP)

Patient burden of acute hepatic porphyria

Module 4 Reviews:

  • The burden of AHP and challenges with diagnosis
  • The debilitating physical and emotional effects AHP may have on patients’ daily functioning
 
Acute hepatic porphyria diagnosis and testing handout

AHP Diagnosis and
Testing Handout

Acute hepatic porphyria diagnosis and testing handout

This helpful flyer summarizes:

  • What AHP is
  • The signs and symptoms
  • Misdiagnosis
  • Using random (spot) urine testing
  • Consequences of delayed diagnosis
 
Acute hepatic porphyria random urine testing guide

AHP Random Urine
Testing Guide

Acute hepatic porphyria random urine testing guide

This detailed guide includes:

  • Testing and protocol information from major US laboratories
 

CREATING AHP RANDOM (SPOT) URINE TEST PANELS IN ELECTRONIC HEALTH RECORD (EHR) SYSTEMS

See instructions for creating AHP random (spot) urine test panels for some of the most common EHR systems.

gGASTRO AHP URINE TEST EHR INSTRUCTIONS

EPIC AHP URINE TEST EHR INSTRUCTIONS

eCLINICALWORKS AHP URINE TEST EHR

NEXTGEN AHP URINE TEST EHR INSTRUCTIONS

Access Additional Resources

For more information about AHP and other forms of porphyria, please visit American Porphyria Foundation, The Porphyrias Consortium, the National Organization for Rare Disorders, and Global Genes. These independent organizations are dedicated to helping healthcare providers, patients, and their caregivers understand porphyria. Alnylam Pharmaceuticals does not endorse and is not responsible for the content on the sites that are not owned and operated by Alnylam.