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:

Newbies

Those who have been recently diagnosed with PRP and have found further Google and Yahoo searches to be redundant and unproductive. Newbies CLICK HEREIn addition, if you are the parent of a Newbie, CLICK HERE, and learn about a newly formed coalition of PRP parents.

Travelers

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.

Remissioners
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.

 

UPDATE — AUGUST  ISSUE OF ON THE ROAD… AVAILABLE

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

 x

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

Understanding PRP

08  Finding answers in the PRP Survival Guide

10  How long does “acute” last?

Diagnosing PRP

13  PRP and psoriasis at the same time?

16  Step therapy

17  PRP Physicians Registry

Treating PRP

19  PRP: Going the natural route

21  Efficacy research begins

Living with PRP

22  Scalp

24  Stress by Candy Cooper

27  Hands

28  Sweating

32  Anti-inflammatory diet)

35  What worked for me: Hugh Ronalds

36  Weight gain or loss

PRP Research

38  Clinical Trials

42  PRPSG Bibliography

43  Core Data — We can do it better

PRP Facebook Support Group

46  July Update