Advocating for the PRP Community!
The PRP Alliance is not a support group. We don’t provide a forum to chat. We don’t manage an email-based list serve program. We are simply advocates of the timely diagnosis, successful treatment and the increased research of pityriasis rubra pilaris. We answer to the PRP Community. Our constituencies include:
Those who have been recently diagnosed with PRP and have found further Google and Yahoo searches to be redundant and unproductive. Newbies CLICK HERE.
PRPers who are on the road to Remission but crave information for specific twists and turns. Travelers need answers to questions that many Newbies are too early in the journey to ask.
Some Remissioners 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. All Remissioners should stay engaged … even if it is just to share their PRP-related experiences with Newbies and Travelers.
For too many years there has not been a systematic effort to enlighten dermatologists, dermatopathologists and researchers about PRP. The PRP Community must recognize and applaud healthcare professionals who are PRP savvy. At the same time we must educate those who are not. It’s that simple.
THIS WEBSITE IS UNDER CONSTRUCTION The PRPA website will be under construction for 365 days (November 6, 2014 through November 5, 2015). Our focus will be on content and functionality rather than aesthetics. We will make it pretty in time for PRP Awareness Day 2015. Content will be added as content is developed.
- NEW — On the Road…The Journey from Onset through Remission, Narch issue [03/01/2015] See March issue
- NEW — The official Rare Disease Day 2015 video is now available. The video recognizes the millions of families, friends and caregivers whose daily lives are impacted by rare diseases like PRP. CLICK HERE to watch.
- NEW — Sixty-two pages have been added to the PRP Survival Guide. Part 6, Chapter 2 deals specifically with prescription drugs that include acitretin (23 pages), methotrexate (7 pages), Remicade (13 pages), Stelara (6 pages), Humira (7 pages) and Enbrel (6 pages).
- NEW — “Special Report: PRP Awareness Day Recap” Another seven-page report provides an overview of the first annual PRP Awareness Day (November 6, 2014) and includes the Core Data Benchmark statistics and UT Southwestern Grand Rounds presentation. PRP Facebook Support Group. [11/09/2014] See Special Report