October 2, 2024

AN URGENT MESSAGE TO
ALL MEMBERS OF THE
PRP FACEBOOK GROUP

• With no warning, Facebook removed our group. I immediately appealed.
• Within a few hours my appeal was summarily denied and our PRP Facebook Group vanished.
• Nearly 2,400 members have lost access to important healthcare information.
• Unless retrieved, we have lost over a decade of insights and observations of over 4,000 PRP patients and their caregivers ± PRP Facebookers all.
• More information will be posted here on October 3 as we prepare to make a second appeal to Facebook’s AI monitors as we consider our options.
• An new Land of Hope .v2 has been established on Facebook. GLICK HERE 
• Please use bill.mccue@prpAlliance.com to reach me  

There are other important tasks at hand. We’ll figure this out and move forward – the favorite direction of every PRPer.

Bill McCue

The PRP (Pityriasis Rubra Pilaris) Alliance is a patient advocacy organization. Since November 2013, the PRP Alliance has served the global PRP community and supported the ever-expanding membership of the PRP Facebook Support Group. Membership has grown from less than 120 to more than 2,100.

The mission of the PRP Alliance is to advocate for the timely and accurate diagnosis of pityriasis rubra pilaris (PRP), the implementation of more effective and accessible treatment options, and an increase in PRP-specific research.

• Every PRP patient, young or old, begins their PRP journey at the same starting point — the first milestone: onset. We had no idea what was happening to our skin nor the journey upon which we were about to embark.
• We reached the second  milestone, diagnosis, only to discover a lack of PRP savviness among healthcare professionals. For too many of us, we were only told how to spell pityriasis rubra pilaris and then referred to Dr.  Google and Dr. Yahoo.
• Once we digested the “official” diagnosis, our focus shifted to treatment where we quickly learned: “What works for one doesn’t work for all.” Arrrgh!
• And then there is the endgame. While most of us set our sights on remission, others looked “down the road” to a more distant outcome: long-term management.

And along the way, we were continually reminded that pityriasis rubra pilaris is an ultra-rare disease and PRP-savvy dermatologists can be just as rare.