7-PRP Advocacy

There has never been a WORLDWIDE SCIENTIFIC SURVEY of 1,000 PRP patients! … until now. On July 29, 2018, over 1,100 PRP patients (or their caregivers) were invited to participate in the UCLA PRP Survey. While 418 (41%) opened the email, only 128 clicked the link to the UCLA PRP Survey page. Said another way: […]

  As an ultra-rare skin disorder, PRP must find allies to open doors. How can the PRP community most effectively impact improvements in the diagnosis, treatment and research for PRP? Some basic questions… What is a patient advocate? What is a PRP advocate? What are the advocacy Issues? ✽  PRP Advocacy Agenda — June 2017

The Dowling Oration of March 2003 The Dowling Oration was delivered by Dr. Andrew Griffiths in Liverpool, England in March 2003 as he reflected on 35 years as a dermatologist. It is frequently used as a reference in PRP-related research. To explain his methodology for calculating the prevalence rate of pityriasis rubra pilaris, Griffiths writes: “Most

What constitutes a rare disease? While not as unique as a unicorn, rare and genetic diseases are uncommon to most doctors and, as a whole, represent a large medical challenge. Combine this with the lack of financial or market incentives to treat or cure rare diseases, and you have a serious public health problem. Here

How to deal with rude people There is a WebMD article about “rude people” written by Camille Noe Pagán, a seasoned journalist specializing in health-related issues. While her article focuses on patients suffering from psoriasis, there are important takeaways for the PRP global community.Comments and questions from others who don’t understand can get some pretty

The History of our Name When James Shooter was admitted to St. Bartholomew’s Hospital in London, England in 1828, he unwittingly became the world’s first patient with what the medical community would eventually call pityriasis rubra pilaris. In 1828, however, Mr. Shooter’s skin disorder did not yet have a name. Seven years passed before Claudius Tarral, a French dermatologist, wrote about the case in “Traite theorique

Pityriasis rubra pilaris (PRP) is a group of rare skin disorders that cause inflammation and shedding of the skin. Typically, PRP appears first as a small spot somewhere on the body and then spreads elsewhere. It will impact different parts of the body in different ways for unpredictable periods of time. PRP patients and their