It is especially fitting that the global PRP community celebrate the life of Tierney Ratti and a her nearly half-century PRP journey. While the symptoms of PRP first appeared in 1972 at the age of 11, it wasn’t until November 1994 before she reached out to the National Organization of Rare Disorders in search of other PRP […]
Tierney Ratti Memorial Read More »
It’s time for me to resurrect the PRP newsletter. Twenty-four issues (an average of 24 pages per issue) were published between April, 2014 and October, 2015. It has taken me two and a half years to get myself to a point — mentally — where I can make another 24-issue commitment. The following webpage is an
A PRP Newsletter Reborn Read More »
The PRP Survival Guide has been reorganized. Please go to: PRP 101: The Basics
Chapter 1 — Understanding PRP (redirect) Read More »
From the Editor I was diagnosed with pityriasis rubra pilaris (PRP) on November 28, 2012 — nearly three months after a red spot appeared on my forehead. Someone from my dermatologist’s office called me to confirm the diagnosis and to schedule an appointment for the following day. All she shared with me was the proper spelling of pityriasis rubra pilaris. That evening
How to Use the PRP Survival Guide Read More »
WHY DO WE NEED YOUR PROFILE? As patient advocates an ultra-rare skin disease, the PRP community — individually and collectively —cannot depend on healthcare professionals, pharmaceutical companies and other third parties to organize us. It is our responsibility! The PRP community is uniquely positioned to gather the “core data” that teaching hospitals need to recruit
FAQs — PRP Patient Profile Update Read More »
From the Editor… Several members of the PRP Facebook Support Group have recently attempted to conduct surveys using the Facebook polling feature. They — and many others over the past four years — are to be applauded for their curiosity and initiative. No matter how basic or complex the poll or survey, there are three basic tasks to perform.
2017 PRP Resources Survey Read More »
There is no excerpt because this is a protected post.
Protected: PRP Community Resources & Activity Report Read More »
There is no excerpt because this is a protected post.
Protected: PRP Alliance Board Meeting 08/05/2017 Read More »
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
Asking Dr. Google? Read More »
The PRP Survival Guide is designed 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 provide users with information to better understand and manage the burden of pityriasis rubra pilaris on body, mind and spirit. No individual