From the Editor… Please use the “Leave a Reply” comment box on this webpage to offer your suggestions, identify errors of omission and commission, or to make ANY comments that might help us create a more useful guide for the PRP community. Standard Therapies Treatment of pityriasis rubra pilaris (PRP) is mainly based on reports of […]
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From the Editor… I have been working on a revision of the PRP Report in the Rare Disease Database hosted by the National Organization of Rare Disorders. The topic of “SIGNS & SYMPTOMS” presented a particularly challenging dilemma. I simply did not know the difference. I thought the terms were redundant. I was wrong I found
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From the Editor… Please use the “Leave a Reply” comment box on this webpage to offer your suggestions, identify errors of omission and commission, or to make ANY comments that might help us create a more useful guide for the PRP community. Affected Populations Based on conversations within the PRP community, we can say with metaphysical
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From the Editor… From the perspective of a PRP patient or caregiver, the definition of DIFFERENTIAL DIAGNOSIS is: Any alternative diagnosis that precedes the enlightened diagnosis of pityriasis rubra pilaris. The PRP community is painfully aware of the challenges faced by both dermatologists and dermatopathologists in the timely diagnosis of PRP. (1) What symptoms are visible to
From the Editor… I have been working on a revision of the PRP Report in the Rare Disease Database hosted by the National Organization of Rare Disorders. One of the topics is SYNONYMS. NORD PRP REPORT SYNONYMS NORD guidelines require “a list of other names for pityriasis rubra pilaris. The current PRP Report offers six
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The initial five classifications of pityriasis rubra pilaris, were presented to the British Association of Dermatologists in 2003 by Dr. Andrew Griffith, a well-respected London-based dermatologist. His classifications reflected 35 years of diagnosing, treating and researching PRP and have been universally accepted by dermatologists worldwide. According to Griffiths, the PRP patient population can be divided into two categories based on the
What are the SIX “types” of PRP? Read More »
From the Editor… As a rule, PRP patients and caregivers are given the proper spelling of pityriasis rubra pillars, the acronym “PRP” and a referral to Dr. Internet. Some of us reach out to Dr. Yahoo. Others seek out Dr. Google. It doesn’t take long for us to learn that using PRP doesn’t work. Enter “PRP” and the
Asking Dr. Google? Read More »
The National Organization of Rare Disorders (NORD) is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. The PRP Alliance is a
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THIS ARTICLE IS BEING UPDATED The PRP community has long lamented the lack of PRP-specific research. In October 2012, however, PRP was moved to the front burner in Philadelphia, PA. The Dermatology and Cutaneous Biology Department at Thomas Jefferson University began significant Card14 research with the participation of a few dozen PRP patients. Two years later,
What is the status of PRP research? Read More »
It has been estimated that only one in 20 dermatologists will diagnose or treat pityriasis rubra pilaris during their professional careers. While that estimate may be totally bogus, we can say without fear of contradiction that very few dermatologists will consider themselves PRP savvy. There are at least four reasons to seek out a PRP-savvy dermatologist:
How do I find a PRP-savvy dermatologist? Read More »