PRP Alliance

PRP Alliance

Treating PRP

Genesis of the NORD PRP Report

From the Editor… The light has finally been turned on. As of September 20, the National Organization of Rare Disorders (NORD) has replaced the 2007 PRP Report with the 2017 revision. We now have a beacon of hope for PRP patients and caregivers to find as they travel the uncharted waters of pityriasis rubra pilaris. […]

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A PRP Newsletter Reborn

It’s time for me to resurrect the PRP newsletter. Twenty-four issues (an average of 24 pages per issue) were published between April, 2014 and October, 2015. It has taken me two and a half years to get myself to a point — mentally — where I can make another 24-issue commitment. The following webpage is an

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Chapter 2 — Treating PRP

From the Editor… PRP Awareness Month (November 1-30) provides an opportunity for the PRP community to revisit the PRP Survival Guide and reassess the current information. What’s missing? What information do you want to have available. What questions are in need of answers? Share your thought via email to The focus here is on treatment options (prescription drugs and

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PRP Community Database Update Grant

by Bill McCue, Founder & President, PRP Alliance, Inc. A little bit of history… When I was diagnosed with adult onset PRP on November 28, 2012, I immediately joined the  PRPSupport Group and subscribed to their email-based forum. As a newcomer to that group, I was frustrated by the lack of response to the questions I posted.

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The Right to Say “NO”

. Editor’s Note: Regardless of the worthiness of any cause, you have a right say “No”.It’s very easy to say “No” when a stranger knocks on your door. Whatever they’re selling, we’re not buying. Let’s face it — we’re all getting pretty darn good at saying “No”. In fact, for most of us, “No” has become

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PRP Community Resources

Updated: 06/19/2020 Message from the Editor The onset of my version of PRP began in early August 2012 with the sudden appearance of a small, red spot on my right temple near my hairline. Within a week the “inconsequential” spot had grown in size — enough to prompt a call to my dermatologist.  By early September the side of my

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