Advocating for the PRP Community
The PRP Alliance is a dermatology patient advocacy organization. We advocate the timely diagnosis of pityriasis rubra pilaris, the identification of successful treatment options and increased research. We serve a worldwide PRP community on a journey from onset through remission.
- Newbies — Adults who have been recently diagnosed with PRP and the parents of children with juvenile onset, all of whom have found Dr. Google and Dr. Yahoo to be redundant and unproductive.
- Travelers — Others are on the road to remission, but crave additional information for specific twists and turns. Travelers need answers to questions that many Newbies are too early in the journey to ask.
- Remissioners — Some say they are cured. Others panic when any red spot appears or they find themselves scratching an itch. Still others must endure an unexpected and debilitating relapse. We encourage Remissioners to stay engaged … even if it is just to share their PRP-related experiences with Newbies and Travelers.
Building Awareness & Promoting PRP Research
There has never been a systematic effort to enlighten dermatologists, dermatopathologists, dermatology physician assistants and dermatology nurses about the concerns of the PRP community. While we recognize and applaud healthcare professionals who are PRP savvy, we must educate those who are not. It’s that simple.
Similarly, we have not been sufficiently proactive in the promotion of new PRP research. We can do better. We will do better.