From the Editors: The PRP Community Database currently tracks 1,622 PRP patients who are now members of the PRP Facebook and/or RareConnect Communities, or are unaligned but have a valid email address. The 2017 PRP Worldwide Census begins today with a simple goal: confirm the data we have and add data we are missing. If […]
1,621 Invited to Share PRP “Core” Data Read More »
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 »
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Protected: Breakthrough Summit Links Read More »
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Protected: Welcome to the Land of Chat 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
Diagnosing PRP Survey Read More »
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
PRP Dermatology Referral Initiative Read More »
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 »
Objective To resurrect the PRP community’s original newsletter. A total of 24 issues (598 pages) of On the Road … Our Journey from Onset through Remission were published during the period April 2014 through October 2015. Problem to be addressed The PRP Alliance does not “push” information to the PRP community. We depend on PRP
PRP Newsletter Revival Read More »