PRP Awareness Month Checklist

Bill McCue, Editor,  PRP Survival Guide

PRP Awareness Month is an opportunity for the worldwide PRP Community to show solidarity. While every diagnosis of pityriasis rubra pilaris results in a unique journey, we all face — or have faced — the daily challenges of body, mind, and spirit.

PRP Awareness Month is an opportunity for the worldwide PRP community to show solidarity. Every diagnosis of pityriasis rubra pilaris results in a unique journey. We face or have faced the debilitating challenges of body, mind, and spirit. We have traveled the SAME road.

Once a year we ask PRP patients and caregivers to share information and build awareness within our own community and with healthcare professionals. Have you done all you can to support our PRP community?


RE: YOUR UNDERSTANDING OF PRP

PRP Links
Have you linked to and read —during PRP Awareness Month — the information via PRP Links including:

❉   PRP Survival Guide, Table of Contents

❉   PRP Survival Guide, Chapter 1 — Understanding PRP

❉   The NORD PRP Report (5,000-word, lay language overview)


RE: SHARING YOUR INSIGHTS AND OBSERVATIONS

PRP Facebook Support Group
Have you joined, posted, commented, replied or reacted to another PRP patient or caregiver during PRP Awareness Month.

PRP Community on RareConnect
Have you joined, posted, commented, and/or replied to another PRP patient or caregiver during PRP Awareness Month.

PRP Meet & Greet
Have you participated in a face-to-face PRP Meet & Greet during PRP Awareness Month?


RE: PRP COMMUNTY DATABASE

PRP Patient Profile
Have you updated you PRP Patient Profile to include you onset date (first appearance if PRP symptoms), onset age and current status?

Registry of PRP-savvy Dermatologists
Have you shared the name and location of your dermatologist?

Location
Have you shared your location, e.g. city, state/province? When someone joins the PRP Facebook Support Group from Ireland, we want to be able to say there are 13 patients, 9 are members of the Facebook Support Group and 3 can be reached via email. Newly diagnosed PRP patients and caregivers should not feel alone when they are not.

Email Address
Have you shared your email address? The PRP Community Database includes 1,759 PRP patient profiles of which 1,068 (60.7%) have a valid email address. The 691 without email addresses include 615 are members of the PRP Facebook Support Group.


RE: OUTREACH TO DERMATOLOGISTS

PRP Links
Have you shared PRP Links with your dermatologist?

Rare Skin Disease Referral Initiative
Have you shared the article published by The Dermatologist in September with your dermatologist? Rare Skin Disease Patients Need Roadmap tells a story that every dermatologist needs to read.


RE: RESEARCH

University of California Los Angeles
Have you taken the UCLA PRP Survey? The survey may be taken by any PRP patient in the world. If yes, have you confirmed your participation?

Oregon Health and Science University
Have you reviewed the immediate opportunity to participate in the OHSU PRP research effort testing the efficacy of Taltz? U.S. PRP patients.

Mayo Clinic
Have you reviewed the immediate opportunity to participate in a the Mayo Clinic’s PRP research effort testing the efficacy of Cosentyx? US patients only.


RE: SUPPORT

PRP Survival Guide — Content
Have you volunteered to help develop content for the PRP Survival Guide, Chapter 3? Contact editor@parSurvivalGuide.org

Website Development — SEO
Have you volunteered your expertise in Search Engine Optimization to improve the rankings of prpAlliance.org and prpSurvivalGuide.org? Contact editor@prpSurvivalGuide.org


The Road from Onset Through Remission

To those who have traveled the road from onset to remission, and to those who are still on the road, we understand that the daily challenges of body, mind, and spirit don’t appear at a steady pace. Rather, they appear as an unexpected roadside hazards or detours, breakdowns and wrong turns, , and during the heat of summer and the cold of winter.

Fortunately, we have have good days in the midst of bad, and meet good people along the way. We share our healing milestones that only a PRP patient or caregiver can appreciate. And we howl at the moon in unison.

There is always something around the corner. Whether fear or triumph, we have only one option  to forge ahead.

Truckers have a phrase in their lexicon: “Put your pedal to the metal.” PRP Awareness Month is when we all should put the pedal to the metal.