PRP Survival Guide

New Members — Getting a Good Start

Editor’s Note Whether you are a newcomer or a seasoned traveler, the more you know about pityriasis rubra pilaris, the better prepared you will be for the journey ahead. The following information has been developed to enlighten PRP patients and their caregivers, family and friends, teachers and school  administrators, and employers and co-workers. This information may also enlighten dermatologists and healthcare providers who need exposure to our unique perspective as patients and caregivers. Download PDF

Please take a few minutes to help us better understand the beginnings of your own PRP journey: from onset to remission.  The PRP Onset to Diagnosis survey has only 12 questions.  Nearly 600 PRP patients have already completed their survey. Go to: http://survey.constantcontact.com/survey/a07ehnkvu87klqootq8/start


PRP Reports 

NORD PRP Report (Google Translate Version) ….A MUST READ FOR NEWBIES, NEWCOMERS & FUTURE MEMBERS

❋ NORD PRP Report (NORD website) (PDF for patient use)

❋ GARD PRP Report (GARD website)


PRP Facebook Support Group

❋   New Member Orientation ….A MUST READ FOR NEWBIES, NEWCOMERS & FUTURE MEMBERS

❋   PRP Awareness Month Diary (November 1-30, 2020)


PRP Survival Guide

❋   How to Use the PRP Survival Guide …..A MUST READ FOR NEWBIES & NEWCOMERS

❋  Understanding PRP

❋   Treating PRP

❋   Daily Life

❋   The Endgame


COVID-19 PRP Clearinghouse

❋    Index

PRP Patient-Friendly Glossary of Words, Terms and Jargon 

❋   Glossary …..A MUST READ FOR NEWBIES & NEWCOMERS

❋   Index

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