Issues related to relapses and setbacks 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 […]
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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 ✽ A registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. – NIH ✽ 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 treatment
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 groups to
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Issues related to pregnancy Pregnancy is one of those issues that doesn’t seem to get much attention among PRP Facebookers.  That being said, please heed this warning: Anyone who is pregnant or contemplating a future pregnancy MUST pay attention to related warnings. The following is an example of a typical warning. IMPORTANT WARNING: FOR FEMALE PATIENTS
Issues related to pain and pain management 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
Issues related to nutrition & dietary supplements 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
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Mobility and related issues 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 mobility. Share articles you feel might
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 a patient or
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Issues related to socialization 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. For those who have participated in face-to-face PRP Meet