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 internet where […]
Rare Skin Disease Referral Initiative Update Read More »
From the Editors: During the summer of 2013, a total of 487 PRP patients were polled by email and given an opportunity to participate in a first-of-its-kind PRP Biopsy Poll. Remarkably, within a 3-week period, a total of 256 invitees (52.6%) shared their biopsy experiences and/or recollections.The primary objective of the PRP Biopsy Poll was to better understand
PRP Alliance to Update 2013 Biopsy Poll Read More »
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
PRP Outreach to US Teaching Hospitals Read More »
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.
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 »
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 »
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 »
From the Editor… With one notable exception, the status of PRP research is a source of concern among the PRP patient population. A search of ClinicalTrials.gov, for example, retrieves only one entry. A pilot study to determine the efficacy of a biologic medication was started at Icahn School of Medicine at Mount Sinai in New York. They registered
RDB — Investigative Therapies Read More »
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
RDB — Standard Therapies Read More »
From the Editor… I recently stumbled upon an article that was published in JAMA Dermatology in January 2014: “Treatment Options for Pityriasis Rubra Pilaris Including Biologic Agents — A Retrospective Analysis From an Academic Medical Center”. What I found most interesting about this research was that I could actually understand what they were presenting. It may also provide insights
PRP Research — Treatment Options Read More »