Purple Canaries

Joyce Gould with Jill Gould

Acute Porphyrias

Day 7 NPAW 2021 PURPLE CANARY COMMENTARY: CAN PORPHYRIA EXPERTS’ INFORMATION REALLY BE RELIED ON?; WRAP-UP ON RARITY/PREVALENCE; HEME DEFICIENCY; DIAGNOSTICS

The earliest transcript of Alnylam’s givosiran (now Givlaari) Roundtables in the PC library is dated August, 21, 2014.(1) Dr. Karl Anderson, UTMB and chairman of APF’s scientific advisory board (SAB) was a participant of that session. I counted at least eleven times where Dr. Anderson provided ambiguous information during his presentation–an introduction to the disease […]

PORPHYRIA EXPERTS: FOR SOCIETIES’ SAKE…STOP DISMISSING, GASLIGHTING AND ABANDONING DESPERATELY ILL ACUTE POPHYRIA PATIENTS! Day 1, Purple Canary 2021 National Porphyria Awareness Week Commentary

“What we have here is a failure to communicate.” This classic line from the American film Cool Hand Luke exemplifies the alarming and capacious disparity between information provided by certain acute porphyria experts and what doctors and patients need to know in order to make informed medical decisions. For decades, these experts have (willfully, it […]