APRIL 6 – 13, 2019
NATIONAL PORPHYRIA AWARENESS WEEK
Finally! An organization that understands…
The New York State Rare Disease Alliance:
A Place for Patients and Caregivers Who are the True Experts in Rare and Complex Disease Care
This is why Closed Facebook Forums dedicated to Porphyria were established long ago and have continued to flourish and expand for years. These pages offer honest insight and support because the individuals truly are experts in knowing their own bodies and/or in the case of caregivers, in providing accurate information in support of these patients when porphyria is afoot. The forums are also where APF acolytes snatch helpful information not available to them on the “experts” pages–some have even been know to appropriate ideas and claim them as their own.
Thank you to the many brave individuals–patients and caregivers–who established and/or monitor these closed forums. They offer a safe place to fall for newly diagnosed patients and those victimized by wizards behind curtains.