Chapter 1 — Understanding PRP

From the Editor…

PRP Awareness Month (November 1-30) provides an opportunity for the PRP community to revisit the PRP Survival Guide and reassess the current information. What’s missing? What information do you want to have available. What questions are in need of answers? Share your thought via email to

The PRP Survival Guide began in November 2013 as a series of webpages included on the PRP Alliance website. While the basic organization has remained the same, the content has relentlessly expanded to over 400 “articles” representing thousands of pages.

The primary target audience for the PRP Survival Guide has always been patients diagnosed with pityriasis rubra pilaris and their caregivers. The secondary audience includes families, friends, dermatologists and other healthcare professionals beyond the ranks of dermatology, e.g., general practitioners, ENT specialists, podiatrists, endocrinologists, mental health specialists, etc.

It is also hoped that PRP patients and caregivers new to the PRP Survival Guide will take advantage of a global PRP community eager to share their PRP-related experiences and insights. We recommend that you consider joining the PRP Facebook Support Group and/or the PRP Community on RareConnect. Both are CLOSED groups where we can share with confidence and confidentiality.

Chapter 1 is an overview of the PRP Survival Guide. These are the questions and topics asked by newly diagnosed PRP patients and their caregivers early in the PRP journey. This information may also be useful when explaining PRP to family and friends, co-workers and employers, teachers and school administrators, and so many more.

The PRP journey should not be undertaken alone. We travel as a group. A common goal and shared experiences. We are in this together.

Bill McCue, Editor

Chapter 1 — Part A: Understanding PRP

MUST READ  The NORD PRP Report (circa 2017)

✭✭✭ The GARD PRP Report (circa 2017)

TBA The Challenge of Body, Mind and Spirit (PRP Awareness Month)

PRP Glossary (Coming Soon)

 What is PRP? (Multiple sources: DermNetNZ, Medscape, etc.)

Why are PRP patient resources so hard to find?

Asking Dr. Google

MUST READ The history of our name (pityriasis rubra pilaris)

Do we know what causes PRP?

Genetics of PRP — CARD14

MUST READ  Is PRP contagious?

MUST READ What constitutes a rare disease?

The Dowling Oration — What’s Missing?

The Dowling Oration (pdf)

What were my odds of getting PRP?

What is my long-term outlook based on Type?

How do we track the worldwide PRP community?

Chapter 1 — Part B: Diagnosing PRP

The Basics

PRP and Skin Biopsies

Misdiagnosing PRP

PRP and Diagnosis Codes

Advocacy of Timely & Accurate Diagnoses