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 […]
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What is the Basic Problem to be Solved? When a patient is diagnosed with pityriasis rubra pilaris (PRP), the dermatologist – with very rare exceptions – does not refer their patient to the PRP Alliance, PRP Survival Guide, PRP Facebook Support Group, or the PRP Community on RareConnect. Typically, the patient is referred to the
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From the Editors: Most PRP patients and caregivers are given very little guidance after their PRP diagnosis is rendered. Referrals to Dr. Google and Dr. Yahoo are quite standard, Balderdash! The PRP Alliance has self-financed an outreach effort to 87 of the dermatology departments of our nation’s teaching hospitals advocating a standard referral to GARD
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Thank you for sharing your information. Bill McCue, Founder/President PRP Alliance, Inc.
Thank You For Being Counted Read More »
Let’s start with a little history. When James Shooter was admitted to St. Bartholomew’s Hospital in London, England in 1828, he unwittingly became the world’s first recorded patient with what the medical community would eventually call pityriasis rubra pilaris. Fast forward 169 years. The PRP community has only been around since late 1997 when a
Sharing data: Are you a skeptic? Updated: January 30, 2020. Most PRP patients/caregivers appreciate the importance of sharing data to help PRP researchers better understand pityriasis rubra pilaris. Because your information is personal and private, it is important that we safeguard any data you share. We hope that our data collection methodology encourages your enthusiastic
PRP Worldwide Census — Sharing Your Journey Read More »
Objective To better understand the role played by dermatologists and dermatopathologists in the diagnosis of PRP. Problem to be addressed While some PRP patients enjoy a relatively quick diagnosis of PRP, many of us have had to suffer through a differential diagnosis that preceded the “official” PRP diagnosis. During that time either the wrong treatment
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Objective To conduct an outreach effort to dermatologists, dermatology physician assistants, and dermatology nurses.j Problem to be addressed When a patient is diagnosed with PRP, the dermatologist – with rare exceptions – does not refer the patient to the PRP Alliance, PRP Facebook Support Group, the PRP Community on RareConnect or to the PRP Survival
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Objective: To conduct a PRP Worldwide Census. Problem to be addressed: The PRP Community Database currently tracks 1,584 PRP patients of which 651 (41%) are members of the PRP Facebook Support Group and 217 (14%) are members of the PRP Community on RareConnect. Unfortunately, the following information is currently missing. ❏½ Missing email addresses: 557
2018 PRP Worldwide Census Read More »
ACKNOWLEDGMENT NORD gratefully acknowledges the following for their assistance in preparing this report: Mark Lebwolh MD, Chairman, Dermatology Department, Icahn Medical School, Mount Sinai Hospital, New York, NY; Jouni Uitto MD, PhD Professor and Chair, Department of Dermatology and Cutaneous Biology. Thomas Jefferson University, Philadelphia, PA; Nicholas A Ross, MD, Lead Investigator and Resident Physician,
Pityriasis Rubra Pilaris Draft for NORD Read More »