The PRP (Pityriasis Rubra Pilaris) Alliance is a nonprofit patient advocacy organization. Since November 2013, the PRPA has supported the PRP Facebook Support Group and its ever-expanding membership.
Our mission 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.
❏½ Every PRP patient, young or old, begins their PRP journey at the same starting point: onset. We had no idea what was happening to our skin and the journey upon which we were about to embark.
❏½ We reach the first milestone, diagnosis, only to discover a lack of PRP savviness among healthcare professionals. For too many of us, we are only provided with the correct spelling of pityriasis rubra pilaris and aimed in the general direction of Dr. Google and Dr. Yahoo.
❏½ Once we digest the “official” diagnosis, our focus shifts to treatment where we learn: “What works for one doesn’t work for all.” Arrgh!
❏½ And then there is the endgame. While most of us set our sights on remission, others must look to a more distant outcome: long-term management.
And along the way, we are continually reminded that PRP is an ultra-rare disease and PRP-savvy dermatologists can be just as rare.