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. 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.

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.

Welcome to the PRP Alliance.
We are small in numbers, but big in hope.

 

UPDATE — JUNE ISSUE OF ON THE ROAD… AVAILABLE

On the Road…The Journey from Onset through Remission, June issue [06/06/2015] offers the following to PRPers, the family and friends of PRPers and those who are PRP patient advocates.

PRP Community News

01  PRPA Earns 501(c)(3) Tax-exempt Status

02  501(c)(3) tax-exempt status and the CSD

03  501(c)(3) tax-exempt status and NORD

05  PRP Referral Mug Program

06  PRP Newsroom

Improving the DIAGNOSIS of PRP

07  Understanding the Mission: Diagnosis

08  The Diagnostic Iceberg

11  Measuring Misdiagnosis

12  Jumpstarting Survival Guide Diagnosis

Improving the TREATMENT of PRP

13  Understanding the Mission: Treatment

14  Caroline Brown on Eyes

16  Hints & Tips

17  Jumpstarting Coconut Oil

Increasing RESEARCH of PRP

19  Understanding the Mission: Research

20  Research Initiatives

Advocating for PRPers Worldwide

21  Understanding Methodology: Advocacy

23  Projects & Programs

24  Healthline Revision

28  Update: Survival Guide Table of Contents

30  Update: IDPOC and World Congress of Dermatology

31  Denmark Dinner

33  PRP Parents Organize

37  Update: Patient Registry

38  BAD Leaflet

41  PRP Timeline: Burt Utley

44  The Dermatologist: AnInvitation to Write an Article

45  Update: PRP Alliance Timeline