PRP Survival Guide

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Patient Registry B

https://blogs.fda.gov/fdavoice/index.php/2014/10/the-more-we-know-about-rare-diseases-the-more-likely-we-are-to-find-safe-and-effective-treatments/ The more we know about rare diseases, the more likely we are to find safe and effective treatments Posted on October 23, 2014 by FDA Voice By: Janet Woodcock, M.D. You may be inclined to think that rare diseases affect only a tiny fraction of the more than 320 million people in our country. That’s true about […]

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Patient Registry A

NORD-FDA Natural History Study Project Page NORD is partnering with disease specific advocacy organizations to launch patient-centered registries to gain a better understanding of rare diseases. The registries will allow patients around the world to share relevant data, connect with researchers, and support research on how variables such as diet, exercise, environmental factors and other

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Asking Dr. Google?

From the Editor… As a rule, PRP patients and caregivers are given the proper spelling of pityriasis rubra pillars, the acronym “PRP” and a referral to Dr. Internet. Some of us reach out to Dr. Yahoo. Others seek out Dr. Google. It doesn’t take long for us to learn that using PRP doesn’t work. Enter “PRP” and the

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Signs & Symptoms of PRP

Signs and Symptoms of PRP From the Editor…How does pityriasis rubra pilaris present? What are the “signs and symptoms” available to a dermatologist that signal the possibility of a pityriasis rubra pilaris diagnosis. What are the clues dermatologists seek? Here is what a search of the internet will find. Healthline.com PRP causes pink, red, or orange-red scaly patches on your

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PRP Parenting Index

  From the EditorThe 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 can harvest that knowledge.Share what you have learned about PRP parenting as a patient or a parent. Share what you have been told

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