A picture that’s really worth a thousand words. Forget the one-of-a-kind red snowflakes. Forget the one-of-a-kind red fingerprints. Even forget the mythical unicorn with the red snowflake on it’s neck. All have been images used to illustrate the rarity of PRP. Now think umbrellas. One red umbrella in a sea of black umbrellas. Not quite […]
Intro A picture worth a thousand words Read More »
What is PRP? PRP patients/caregivers who have completed the Onset to Diagnosis Retrospective Survey Number of PRP Research Cohorts as of May 9, 2025: 27 Each day I will update the list of completed surveys using what I would call the “disassembled name” of the person completing the survey. I am making the assumption that
PRP Research Cohort List Read More »
An Urgent Message ToAll Members Of ThePRP Support Group On October 2, 2024 — without any warning — Facebook Technology removed our the Facebook-based PRP Support Group. I made an immediate appeal which meant “clicking a button and hoping for the best.” Within a few hours my appeal was summarily denied and our PRP Facebook
New Member Orientation Facebook – Copy Read More »
Editor’s Note — The unveiling of Principle 2 is scheduled for December 29, 2022. Â
Self-Advocacy Principle 2 Read More »
Editor’s Note: The following information about the role of patient advocates was “harvested” from the National Patient Safety Foundation, Boston, MA several years ago and reflect the needs of PRP patients worldwide.   The Role of the Patient Advocate  Illness is a stressful time for patients as well as for their families. The best-laid
What is a patient advocate? Read More »
Autoimmune v. Autoinflammatory: The Verdict In those early days as an advocate for the PRP community, the rank and file (patients and caregivers) couldn’t care less if pityriasis rubra pilaris was an autoimmune or an autoinflammatory disease. I should have known I was in trouble when I first asked Drs. Google and Yahoo. “Autoinflammatory disorders
Autoimmune v. Autoinflammatory: The Verdict Read More »
What are the Quality of Life Impacts of PRP? A series of”Quality of Life” focus groups were conducted in April and July (2021) invoving 40 PRP patients as part of ongoing research at Oregon Health and Science University. The following is the Discussion Guide used in the conduct of those focus groups. The questions help
PRP “Quality of Life” Discussion Guide Read More »
Moderator’s Note. The purpose of this webpage is to provide an overview of the next series of PRP “Quality of Life” Focus Groups. A focus group is a research technique used to collect data through group interaction. A focus group is designed to identify feelings, perceptions, and thoughts about a particular topic. The first PRP Focus Group took place on Tuesday,
Moderator’s Note. The purpose of this webpage is to provide an overview of the upcoming PRP “Quality of Life” Focus Groups. A focus group is a research technique used to collect data through group interaction. A focus group is designed to identify feelings, perceptions, and thoughts about a particular topic. The first PRP Focus Group took place on Tuesday, April
PRP Quality of Life Focus Group: May 24, 2021 Read More »
Moderator’s Note. The purpose of this webpage is to provide an overview of the upcoming PRP “Quality of Life” Focus Groups. A focus group is a research technique used to collect data through group interaction. A focus group is designed to identify feelings, perceptions, and thoughts about a particular topic. The first PRP Focus Group took place on Tuesday, April
PRP Focus Group Overview Read More »