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 HERE.
  • 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.

The PRP Alliance also serves healthcare professionals in the field of dermatology.

  • Enlightenment
    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.
  • PRP Research
    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 — APRIL ISSUE OF ON THE ROAD… AVAILABLE

On the Road…The Journey from Onset through Remission, April issue [03/06/2015] provides a detailed overview of events leading up to, during and after the American Academy of Dermatology 73rd Annual Meeting in San Francisco (March 20-23, 2015).

UPDATE —501(c)(3) INITIATIVE

The PRP Alliance has paid the required fees to LegalZoom to file Articles of Incorporation in the State of Texas and to apply for 501(c)(3) tax-exempt status with the Internal Revenue Service. 501(c)(3) tax-exempt status is a apre-requisite for membership in the Coalition of Skin Diseases (CSD) and the National Organization of Rare Disorders (NORD). Both organizations will provide critical resources to help the PRP Alliance achieve it’s patient advocacy goals.

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.