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 PRP as […]
PRP, Relapses and Setbacks Read More »
From the Editor The PRP community needs a PRP Patient Registry. The following is a broad overview of issues related to Patient Registries and Natural History Studies. WHAT IS A PATIENT REGISTRY ❏½ A registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. – NIH ❏½ Contact registries
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What do you want to know about the PRP Alliance? The PRP (Pityriasis Rubra Pilaris) Alliance is a nonprofit, patient advocacy organization incorporated in the State of Texas. The stated mission the PRP Alliance is to advocate for the timely and accurate diagnosis of pityriasis rubra pilaris (PRP); the implementation of more effective and accessible
How To Join The PRP Facebook Support Group For those who are seasoned Facebookers, the PRP Facebook Support Group is relatively easy to find. ❏‰ Step One – Go to Facebook.com ❏‰ Step Two – Locate “Search for people, places and things” ❏‰ Step Three – Enter: “Pityriasis Rubra Pilaris (PRP)” ❏‰ Step Four –
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From the Editor RareConnect is an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. Overview RareConnect provides a “safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient
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From the Editor Pregnancy is one of those issues that doesn’t seem to get much attention among PRP Facebookers. That being said, an effort will be made during PRP Awareness Month (November 1-30, 2020) to harvest feedback from the PRP global community. Please use “Leave a Reply” to ask a question or share a PRP-related
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 PRP as
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 PRP as
PRP, Nutrition & Dietary Supplements Read More »
From the Editor The PRP Survival Guide is designed to be 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. Only we are best positioned to harvest that knowledge. Share what you have learned about PRP and
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 PRP as
PRP & Mental Wellness Read More »