What do you want to know about the PRP Alliance?
The PRP (Pityriasis Rubra Pilaris) Alliance is a nonprofit, patient advocacy organization incorporated in the State of Texas.
The stated mission 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.
In fact, the purpose of the PRP Alliance was to put PRP on the map as a patient advocacy resource.
✽ 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.
✽ We reach the first milestone, diagnosis, only to discover a lack of PRP savviness among healthcare professionals. For many of us, we are provided with the correct spelling of pityriasis rubra pilaris and aimed us in the direction of Drs Google and Yahoo.
✽ After we digest the “official” diagnosis, our focus shifts to treatment where we learn: “What works for one doesn’t work for all.”
✽ 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 are just as rare.
