Uncategorized

Home Survival Guide Communities Advocacy Leadership About Us Footer Disclaimer Copyright Notice Privacy Terms of Use Site Map

Welcome to the PRP (Pityriasis Rubra Pilaris) website. By continuing to browse this website you are agreeing to comply with and be bound by the following terms and conditions of use. These terms, along with our privacy policy, govern the relationship between the PRP Alliance and users of this website. The term “PRP Alliance” or

All rights reserved © 2013, 2014, 2015, 2016, 2017 by PRP Alliance, Inc., Plano, Texas. The contents of this website cannot be reproduced or copied in any manner other than electronically, and only to the extent necessary to read it on the World Wide Web. The information presented at the PRP Alliance website may not

General The PRP (Pityriasis Rubra Pilaris) Alliance website is designed for educational purposes only and not for the purpose of rendering medical advice. It is not the intention of the PRP Alliance website to provide specific medical advice, but rather to provide users with information to better understand their disease and treatment options. Because each

SCOPE The PRP Alliance (PRPA) is a nonprofit 501(c)(3) tax-exempt organization devoted to assisting individuals diagnosed with the pityriasis rubra pilaris (PRP) and their caregivers. PRPA provides information and education to both the lay and the professional communities, advocates on behalf of its members in the political and healthcare arenas, and serves as a “bridge”

From the Editor… On January 26, 2017, Jan T (Ringwood, NJ), posted a message to members of the PRP Facebook Support Group regarding clothing. The feedback she received is well worth including in the PRP Survival Guide. I have attended three annual meetings of the American Academy of Dermatology (Denver, San Francisco and Orlando). Delasco

From the Editor… From time to time, PRP patients and caregivers will share insights regarding eye, vision and the need to access an opthamologist for educational purposes only and not for the purpose of rendering medical advice. It is not the intention of the PRP Survival Guide to provide specific medical advice, but rather to

NORD-FDA Natural History Study Frequently Asked Questions What is the NORD Registry Program? The NORD Registry Program is a compilation of services that assist member organizations through all the steps of developing, launching and running a Registry. What is the NORD Natural History Study Database Project? The NORD Natural History Study Database Project is one

Jan. 15, 2015 TOPIC: Research Registries for Rare Diseases: Involve the Patient Registries for Rare Diseases: Involve the Patient Posted by Jennifer Huron In a new interview with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children’s National Medical Center in Washington, D.C. and NORD board member, talks about the importance of patient

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