VIEW OR DOWNLOAD HELPFUL AHP-RELATED RESOURCES
Educational materials and resources have been created to provide you with a deeper understanding of acute hepatic porphyria (AHP). These resources will help you identify, diagnose, and manage your patients with this debilitating disease.
This series of learning modules lays the groundwork for understanding porphyria, recognizing symptoms, and gaining insight into how it affects your patients. Modules can be viewed online and/or downloaded as PDFs.
Module 01:
CLASSIFICATION OF
PORPHYRIA
MODULE 1 Reviews:
- 2 major categories of the rare genetic diseases classified as porphyria—
acute hepatic porphyria and photocutaneous porphyria - The heme biosynthesis pathway
- The prevalence of the most common AHP
- Precipitating factors of acute attacks
MODULE 02:
PATHOPHYSIOLOGY OF ACUTE HEPATIC PORPHYRIA (AHP)
MODULE 2 Reviews:
- The pathophysiology of AHP
- 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
- The clinical evidence for the role of ALA (aminolevulinic acid) and PBG (porphobilinogen) in AHP attacks
MODULE 03:
ACUTE HEPATIC PORPHYRIA (AHP): SIMPLIFYING THE DIAGNOSTIC PATH
MODULE 3 Reviews:
- The diagnostic challenges of AHP
- Common AHP symptoms
- How and why AHP can be easily misdiagnosed
- The biochemical diagnosis of AHP
- Genetic testing as a confirmatory method
MODULE 04:
THE PATIENT BURDEN OF ACUTE HEPATIC PORPHYRIA (AHP)
MODULE 4 Reviews:
- The clinical and lifestyle burden of AHP
- Challenges with diagnosis
- The debilitating physical and emotional effects AHP has on patients’ daily functioning
AHP DIAGNOSIS AND
TESTING HANDOUT
This helpful flyer summarizes:
- What AHP is
- The signs and symptoms
- Potential misdiagnoses
- What to test for with urine tests
- Consequences of delayed diagnosis
Access Additional Resources
For more information about AHP and other forms of porphyria, please visit the following organizations dedicated to helping healthcare providers, patients, and their caregivers understand porphyria:
- Belgische Organisatie voor Kinderen en volwassenen met een Stofwisselingsziekte
- Porfyri Foreningen
- Association Française des Malades Atteints de Porphyries
- Berliner Leberring e.V.
- Global Pophyria Advocacy Coalition
- Schweizerische Gesellschaft für Porphyrie
- Patiëntenvereniging Acute Porfyrie
- Asociacion Española de porfiria
- Riksföreningen mot porfyrisjukdomar
- International Porphyria Patient Network
- British Porphyria Association
AS1-INTR-00002 October 2023
