https://rarediseases.org/wp-content/uploads/2015/05/BioCentury-pg5-6.pdf CHARTING RARE STARS BY EMILY CUKIER-MEISNER, SENIOR WRITER A databank constructed by the National Organization for Rare Disorders and the VHL Alliance could serve as a model for how patient organizations can generate natural history data to help speed development and FDA review of new treatments. The Cancer in Our Genes International Patient […]
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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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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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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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Editor’s Note: For many PRP patients and caregivers, the importance of “Liver Numbers” cannot be overstated. The following information was harvested from three credible websites. Please feel free to add your experiences and insights on this topic. Use “Leave a Reply” at the end of this webpage. From MedicineNet.com AST (SGOT) and ALT (SGPT) are
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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 PRP as a patient or
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