Peer Review of the 60-Second PRP Roadmap DATE: January, 2024TO: Peer Review ParticipantsFROM: Bill McCue, PRP AllianceSUBJECT: 60-Second PRP Roadmap — Peer Review Workbook No one has ever written a book about pityriasis rubra pilaris from the patient perspective. In fact, no one has ever written about PRP from any perspective. I am asking you […]
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Peer Review Updates Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo.
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It’s time to rise above the noise level Our participation in the GRIDD survey is critically important to the PRP global community. GRIDD is an opportunity for all of us to document the impact pityriasis rubra pilaris on your own lives. 1.  Physical impacts, e.g., pain, itch, mobility, vision, sleep, etc.2.  Daily life impacts , e.g., daily routine, leisure,
Target Audience While the 60-Second PRP Roadmap is written for three audiences of readers: PRP patients, PRP caregivers and dermatologists, the primary focus is on patients. PRP patients are the travelers PRP is a unique journey from onset to someplace else. As PRP patients we have no control over the road ahead. We are unwilling
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In Memoriam Editor’s NoteI received a telephone call from Suzanne Owens on July 25 with sad news. Her husband of 57 years, Ed, had passed away one day earlier. She was calling because her family wanted to direct contributions in Ed’s memory to the PRP Alliance in lieu of flowers. Both Suzanne and Ed had joined
Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Bill McCue (Plano, TX) Whack! Whack! Whack! by Bill McCuey Bill NcCue When I was in 4th grade (circa 1956), my mother, father, brother and I moved to a small, World War II vintage house in Bristol,
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Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Issues Related to PRP and PAIN The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to
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 PRP Perspectives: Pain by Jan Tennant, Senior Editor, PRP Survival Guide Pain is scary. It can make it hard to focus on anything else. It makes movement and physical activity difficult. It can make sleep impossible. Unlike many other symptoms of PRP, pain is invisible to others. Unusual or intense pain is alarming for
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Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Abstract Background Pityriasis rubra pilaris (PRP) is a rare and often severe inflammatory skin disorder with major detriment to patients’ quality of life. While past studies have described in detail the morphologic and histopathologic presentations of PRP,
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THE QUESTION Carolyn D (Willis, Texas) authored the following post (dated January 20, 2023) to members of the PRP Support Group: “Is there any data on how many PRP patients there are now in the world? Just curious. When I tell people about PRP they sometimes ask how many there of us.” Member-only link to
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