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 — MAY ISSUE OF ON THE ROAD… AVAILABLE

On the Road…The Journey from Onset through Remission, May issue [05/06/2015] 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).