PRP Awareness Month Agenda

The month of November has once again been designated “PRP Awareness Month”. Over the next 30 days, nearly 2,000 PRP patients, plus their caregivers (parents, spouses and partners, extended family members, and friends) will have the opportunity to better understand pityriasis rubra pilaris and its unrelenting challenges to body, mind, and spirit.

Week #1 — November 1-7

 PRP Global Database & Census Update

As of October 31, 2019, the PRP Global Database now maintains 1,984 PRP patients profiles. The PRP Global Database is used to:

✽  Conduct PRP global surveys regarding successful treatment options

✽  Accurately calculate the average duration of PRP based on Onset Date and Current Status

✽  Facilitate the scheduling of PRP Meet & Greets worldwide

✽  Communicate more effectively with PRP patients and caregivers.

PRP Awareness Month provides a 30-day window during which every PRP patient profile should be updated. CLICK HERE to access the 2020 PRP Global Census online.

PRP Survival Guide: Chapter One 

The PRP Survival Guide has been a repository for patient-friendly, lay language articles about PRP since November 2013. “Understanding PRP” provides a basic overview for newly diagnosed PRP patients. LINK TO CHAPTER ONE

The cornerstone of Chapter One is the NORD PRP Report. Revised in 2017, the NORD PRP Report is a “must read” for every PRP patient, caregiver, family member, friend, co-worker, employer, school administrator and teacher.  As part of PRP Awareness Month, the NORD PRP Report is now available in three formats.

✽  The official version of the NORD PRP Report is available online at the National Organization of Rare Disorders website.

✽  In response to requests by PRP patients and caregivers who do not speak or read English, an unabridged version of the NORD PRP Report has been added to the PRP Survival Guide and includes a TRANSLATE button. ACCESS TRANSLATION

✽  In response to requests by PRP patients and caregivers who want a PDF for attachment to an email, text message or handout, a downloadable PDF will be available by November 3.

PRP Nitrile Glove Campaign

For many PRP patients, the wearing of blue gloves is too often a source of embarassment. As a sign of solidarity during PRP Awareness Month, PRP patients, caregivers, family members and friends are asked to wear a nitrile glove IN PUBLIC and take a selfie with someone you have educated about PRP. Selfies will be posted in the PRP Survival Guide. LEARN MORE

Meet & Greet Challenge

With an estimated prevalence rate of one in 400,000, PRP is one of 574 über-rare skin disorders identified by the Genetic and Rare Diseases Information Center (GARD). PRP Awareness Month is an opportunity for you to connect face-to-face with fellow PRP patient and take a selfie. Send your PRP Meet & Greet selfie to Selfies will be posted in the PRP Survival Guide. LEARN MORE

Week #2 — November 8-14

PRP Caregiver Week

PRP Caregiver Week is an opportunity for the PRP global community to share insights and experiences of caregivers (carers in some parts of the world). This is the time to focus on the challenges of body, mind, and spirit from the perspective of the caregiver. Details will be posted by November 8.

PRP Find-a-Derm Database UPDATE

Over 700 dermatologists are listed in the PRP Find-a-Derm Database. My goal is to update the names of PRP-savvy and/or PRP-experienced dermatologist. If a PRP patient is not satisfied with the treatment they are currently receiving, let’s give them some options. See Question #6 in the 2020 PRP Global Census.  SHARE YOUR DERMATOLOGIST

Rare Skin Disease Referral Initiative

When a patient is diagnosed with one of 574 rare skin disease, the standard treatment protocol should include a referral to the Genetic and Rare Diseases Information Center (GARD). Moreover, the referral should be recorded in the patient’s electronic medical record.  LEARN MORE

PRP Survival Guide — Chapter Two

The focus here is on treatment options (prescription drugs and topicals) as well as managing our expectations. PRP patients and their caregivers learn early that treatment is a roll of the dice — what works for one doesn’t work for all. We also learn that not all dermatologists are PRP savvy.  LINK TO CHAPTER TWO

Week #3 — November 15-21

PRP Juvenile Onset Week

The PRP Global Database currently maintains patient profiles for 163 individuals diagnosed with Juvenile Onset PRP. This important subset of the PRP patient population deserves special attention. During PRP Awareness Month we we will spotlight the courage and resourcefulness of both patients and parents..  Details will be posted by November 15.

PRP Survival Guide — Chapter Three

Every aspect of the PRP experience … coping with the 24/7 challenges to body, mind and spirit. Feedback by hundreds of fellow travelers who have shared their insights based on their unique journeys with posts and comments as members of the PRP Facebook and RareConnect communities.  LINK TO CHAPTER THREE

PRP Patient Bill of Rights

As PRP patients and caregivers we depend on healthcare professionals to make us well.  The fact that PRP is a rare skin disease requires that we manage our own expectations. We have both rights and responsibilities regarding the treatment of pityriasis rubra pilaris. Perhaps it is time for the PRP community to create a PRP Patient Bill of Rights. Week #3 of PRP Awareness Month is the time we should ponder the topic.

Details will be posted by November 15.

Week #4 — November 22-28

Beiersdorf Recognition Week

For the past five years, Beiersdorf, makers of Aquaphor® and Eucerin®,  have offered a program for families in the United States who use large amounts of these products. The company will send a free case of the product, as long as specific instructions are followed. The company will send a free case of the product, as long as specific instructions are followed. We should NOT take Beiersdorf’s generosity for granted. Send a selfie holding a “tub” of Eucerin or Aquaphor to editor@prpSurvivalGuide.  Learn Details

PRP Survival Guide — Chapter Four

For most PRP patients and caregivers, the outcome we seek is remission. For others, the PRP journey is defined by long-term management of symptoms rather than remission. While the objective of a PRP treatment plan is remission, neither PRP-savvy dermatologists nor the PRP global community of patients and their caregivers have an agreed upon a definition of remission.


PRP Research — UCLA et. al. 

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The Final Days — November 29-30

PRP 101 — The Test

Open Book Online Quiz. What do I need to know about PRP. Newly diagnosed PRP patients or “seasoned” PRP patients need a basic primer before they tackle the PRP Survival Guide, or even jump into the PRP Facebook Support Group (aka Land of Chat). Let’s give them an “easy read”.  Details will be posted by November 29.