Advocating for the PRP Community
The PRP Alliance is a patient advocacy organization. We advocate the timely diagnosis of pityriasis rubra pilaris, the identification of successful treatment options and increased research, and the formation of the PRP Medical Advisory Board.
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. In addition, if you are the parent of a Newbie, CLICK HERE, and learn about a newly formed coalition of PRP parents.
PRPers who 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.
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.
Enlightenment of Healthcare Professionals
For too many years there has not been a systematic effort to enlighten dermatologists, dermatopathologists, dermatology physician assistants and dermatology nurses about concerns of the PRP community. We 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. Similarly, we have not been sufficiently proactive in the promotion of new PRP research. We can do better. We will do better. CLICK HERE to learn about PRPA initiatives to enlighten healthcare professionals.
Welcome to the PRP Alliance.
We are small in numbers, but big in hope.
On the Road…The Journey from Onset through Remission, August 2015 Issue [08/01/2015] offers the following to PRPers, the family and friends of PRPers and those who are PRP patient advocates.
TABLE OF CONTENTS
PRP Patient Advocacy
01 Thank You — PRP Strong
02 AADA Legislative Conference
03 Revising the NORD PRP Report
06 STANDING UP for your health
07 PRP Referral Mug Program
08 Finding answers in the PRP Survival Guide
10 How long does “acute” last?
13 PRP and psoriasis at the same time?
16 Step therapy
17 PRP Physicians Registry
19 PRP: Going the natural route
21 Efficacy research begins
Living with PRP
24 Stress by Candy Cooper
32 Anti-inflammatory diet)
35 What worked for me: Hugh Ronalds
36 Weight gain or loss
38 Clinical Trials
42 PRPSG Bibliography
43 Core Data — We can do it better
PRP Facebook Support Group
46 July Update