From the Editor… With the publication of my article in September issue of The Dermatologist (Rare Disease Patients A Need Roadmap), the PRP Community can now begin the outreach campaign that has been nearly a year in the making. Here’s the plan and how YOU can help. ❉ An effort will be made to reach out to […]
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Editor’s Note When I was diagnosed with pityriasis rubra pilaris on November 27, 2012, I was entering my fifth month of angry skin, escalating pain, and profound hopelessness. It took two dermatologists, a week of hospitalization, and four biopsies before I was on the right road, albeit a steep and hazardous mountain. Over the past eight years
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Protected: Thinking Out of the Box Read More »
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EDITOR’S NOTE: While PRP is not life-threatening, it is absolutely life-altering. The journey from onset through redemption is not a high-speed highway with a beautiful view. To the contrary, it can be a treacherous road of pain and discomfort, a seemingly endless series of hills and mountain-like barriers with road blocks and detours to impede your
From the Editor… PRP Awareness Month (November 1-30) provides an opportunity for the PRP community to revisit the PRP Survival Guide and reassess the current information. What’s missing? What information do you want to have available. What questions are in need of answers? Share your thought via email to editor@prpSurvivalGuide.org. The focus here is on treatment options (prescription drugs and
Chapter 2 — Treating PRP Read More »
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From the Editor 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 harvest that knowledge for those in need of enlightenment. Share what you have learned about the impact of PRP on
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There has never been a WORLDWIDE SCIENTIFIC SURVEY of 1,000 PRP patients! … until now. On July 29, 2018, over 1,100 PRP patients (or their caregivers) were invited to participate in the UCLA PRP Survey. While 418 (41%) opened the email, only 128 clicked the link to the UCLA PRP Survey page. Said another way:
As an ultra-rare skin disorder, PRP must find allies to open doors. How can the PRP community most effectively impact improvements in the diagnosis, treatment and research for PRP? Some basic questions… What is a patient advocate? What is a PRP advocate? What are the advocacy Issues? ✽ PRP Advocacy Agenda — June 2017 With
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