Purple Canaries

Joyce Gould with Jill Gould

Porphyrrias Consortium

Acute Porphyria Patient/Caregiver Discussion Paper: WILL US/EU PORPHYRIA EXPERTS MAKE A MOCKERY OF PRECISION MEDICINE AT ICPP?

As porphyria experts from around the world make their way to Milan’s 2019 International Congress of Porphryins & Porphyrias (ICPP), a group of acute porphyria patients/caregivers from various countries awaits the outcome of an ICPP roundtable session, “How to define acute attack of Porphyrias.”  The acute porphyrias are metabolic disorders that fall within the disease […]