PRP Alliance Information

The PRP (Pityriasis Rubra Pilaris) Alliance is a nonprofit patient advocacy organization. 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 . Every PRP patient, young or old, begins their PRP journey at the same starting point: onse t . We had no idea what was happening to our skin and the journey upon which we were about to embark. 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. Once we digest the "official" diagnosis, our focus shifts to t reatment where we learn: "What works for one doesn't work for all.