Alnylam Act^® Acute Hepatic Porphyria Sponsored Testing Program

To be eligible for the Alnylam Act Acute Hepatic Porphyrias Testing Program, patients in the US and Canada must be pubescent or older and meet at least one of the following criteria:

Family history of acute hepatic porphyria.

OR

Elevated (> upper limit of normal) urinary porphobilinogen (PBG) or aminolevulinic acid (ALA) levels.

OR

Unexplained recurrent (more than one), prolonged (>24 hours) episodes of severe, diffuse (poorly localized) abdominal pain.

And at least TWO of the following:

• Red to brownish urine
• Blistering skin lesions on sun-exposed areas
• Peripheral nervous system manifestations occurring around the time of abdominal pain (for example, motor neuropathy (paresis), sensory neuropathy (numbness, tingling, limb pain)
• Central nervous system manifestations occurring around the time of abdominal pain (for example, confusion, anxiety, seizures, hallucinations)
• Autonomic nervous system manifestations occurring around the time of abdominal pain (i.e., hyponatremia [Na in blood < lower limit of normal], tachycardia, hypertension, nausea and vomiting, constipation)