• On October 2, 2024, Facebook’s technology (artificial intelligence) deactivated the link to the PRP Facebook Group founded in June 2008.

• I immediately appealed the actions of Facebook.

• Within a few hours my appeal was summarily denied and our PRP Facebook Group and 2,370 of our 2,371 members have lost access to important healthcare information.

• As Administrator, however, I can still access our Land of Hope and confirm and confirm that the archive is intact.

• Unless Facebook reverses the actions of their AI technology, we will permanently loose access to over a decade the collective insights and observations of over 4,000 PRP patients and their caregivers — PRP Facebookers all.

• A new — and hopefully temporary — Land of Hope .v2 has been established on Facebook. CLICK HERE TO REJOIN. 

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 founded in November 2013. To that end we have served the PRP global community and supported the ever-expanding membership of the PRP Facebook Support Group. Membership has grown from less than 120 to more than 2,300.

The mission of the PRP Alliance is to advocate for the timely and accurate diagnosis of 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 PRP is an ultra-rare disease and PRP-savvy dermatologists can be just as rare.https://www.facebook.com/groups/15865278115