Purple Canaries

Joyce Gould with Jill Gould

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National Porphyria Awareness Week 2020

Final 4/25 So there it is: “The number of patients” is APF et al’s ticket to the money train. For those who were lucky enough to have produced APF et al’s “gold standard” at one point or another and were granted an acute porphyria diagnosis, I understand, I really do, why some feel gratitude and […]

National Porphyria Awareness Week – 4/24

Continued… The month before givosiran received FDA approval, an investor analyst questioned AHP prevalence numbers, apparently seeking reassurance that market conditions would support financial expectations now and in the future as the potential for 5,000 patients had been mentioned before.  Alnylam’s president responded, “as we get really granular on the patients that have active disease […]

National Porphyria Awareness Week 2020 – 4/23

The sanctity of porphyria rareness permeates all that APF is about. Yet pinning down just how prevalent the acute porphyrias really are in the US has never been an easy task. APF’s website states, “taken together, all forms of Porphyria afflict fewer than 200,000 people in the United States.” “16 Shocking Porphyria Statistics” (APF-sponsored) claims, […]

National Porphyria Awareness Week 2020 – 4/22

Continued – 4/22 It took nearly three decades for APF to make its next big financially-driven motive-move—welcoming Alnylam Pharmaceuticals into the alliance (~2013). This was no doubt predicated on knowing that more governmental incentives were coming down the pike, namely Obama’s 2015 Precision Medicine Initiative and the 21st Century Cures Act (2016). By then Mount […]

National Porphyria Awareness Week 2020 4/21

Continued… Why would intelligent, medically trained, oath-swearing physician-scientists (experts no less) allow such medical mockery to happen? One word—motive. And that’s what links APF et al and Hitler’s Big Lie Technique (BLT)—motive. On its face, “Make the lie big, make it simple, keep saying it and eventually they will believe it” was the launching point […]

National Porphyria Awareness Week 2020 – 4/20

Continued from National Porphyria Awareness Week 2020Tues 4/20/2020 NATIONAL PORPHYRIA AWARENESS WEEK 2020 – 4/21 Why would intelligent, medically trained, oath-swearing physician-scientists (experts no less) allow such medical mockery to happen? One word—motive. And that’s what links APF et al and Hitler’s Big Lie Technique (BLT)—motive. On its face, “Make the lie big, make it […]

NPAW – April 19, 2020

Continued from National Porphyria Awareness Week, April 18, 2020 How these rejected patients’ predicaments compare with the horrific enormity of Hitler’s era of lost souls and destroyed lives may not be readily fathomable but one must remember that individual relativity and contemporary times reign. These people’s lives have been medically, financially, emotionally and socially ruined […]

ACUTE HEPATIC PORPHYRIA

National Porphyria Awareness Week, April 18-15, 2018 While telling me that her acute porphyria diagnosis, granted in her country of origin had just been revoked and the beneficial treatments she’d received there refused by the APF-connected US porphyria expert she’d approached for help, a desperately ill patient blurted out, “what they are doing to us […]

Where is the documentation of the basic research done to support the outrageous diagnostic deviations from the Father of AIP (Waldenstrom’s and his colleagues’) era?

When it comes to AIP (and the other acute porphyrias), porphyria experts (particularly US) seem to have neglected basic research after Waldenström (1906-1996) and colleagues of that era’s findings had been established and documented. Why? For a disease that was identified 80+ years ago and has garnered the bulk of acute porphyria attention since then, […]

Acute Porphyria “Missed Diagnosis” Patients Speak Out

ACUTE PORPHYRIA PATIENT/CAREGIVER DISCUSSION PAPER An Open Letter/Response to Corresponding Authors: Jean-Charles Deybach, MD, PhD and Robert J. Desnick, PhD, MD From:   Joyce Gould, mother, caregiver and author of “Purple Canary” on behalf of black-listed, “a.p. missed diagnosis” acute porphyria patients/caregivers Re:       “International Porphyria Molecular Diagnostic Collaborative [IPMDC]: an evidence-based database of verified pathogenic and […]