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:
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.
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.
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