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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From the Editor… With the support of the National Institutes of Health and the Foundation for Ichthyosis & Related Skin Types (FIRST), Yale University School of Medicine is building the first patient registry for ichthyosis and related skin types. A patient registry is the cornerstone of research. Investigators researching PRP, for example, will have access
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From the Editors: The PRP Community had long lamented the lack of PRP research until Thomas Jefferson University began genetic research in 2012. Three years later TJU initiated a clinical research ieffort that continues today. Recently Yale University has committed to genetic research, a PRP patient registry, and a Burden of Skin Disease study. Why
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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: 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 »
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 participation in the upcoming PRP Worldwide Census. Confidential Data — While
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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… My first PRP Awareness Day was November 28, 2012 and quite “unofficial” by any standards. It began with a phone call from my dermatologist’s office. I was told that the appearance of a red spot on my forehead on August 8 — nearly four months prior — had been the onset of pityriasis rubra pilaris. Like
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