The PRP (Pityriasis Rubra Pilaris) Alliance is a nonprofit 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. During the past eight years membership has grown to less than 120 to nearly 1,900.
We have just received confirmation that Oregon Health and Science University’s Quality of LifeHERE research has finally been published in JEADV. Here’s the link: http://doi.org/10.1002/jvc2.107
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 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.