PRP Alliance

PRP Alliance

May 2017

PRP, Stress and Triggers

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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Shedding and Flaking

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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PRP, Relapses and Setbacks

  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

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PRP Patient Registry

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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PRP Alliance

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

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PRP Community on RareConnect

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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