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It was Thursday, October 1, 2015 when I posted the 24th and final issue of On the Road… on the PRP Alliance website. After writing 598 pages of “PRP stuff” I was ready to shift my focus to the PRP Survival Guide. No more self-imposed, end-of-the-month deadlines for me. Besides, I was in remission.

It has been over two years and I am still in remission — but eager to publish a newsletter for the PRP community.

I urge every PRP patient and caregiver who subscribes to On the Road…  to take the time to read what we publish and share your personal insights. PRP patients and caregivers live with PRP day in and day out. You are the subject matter expert for your version of PRP. We need to tell all our stories.

Bill McCue, Editor

Resources Supporting PRP Patients & Caregivers

PRP Alliance.Inc.

The PRP (Pityriasis Rubra Pilaris) Alliance is a 501(c)(3), nonprofit, patient advocacy organization.Our mission is to advocate for the timely and accurate diagnosis of pityriasis rubra pilaris (PRP), the implementation of more effective and accessible treatment options, and an increase in PRP-specific research. Advocacy contacts:

Bill McCue, Founder/President
Plano, TX
Telephone: (214) 205-0574
Email: bill.mccue@prpAlliance.org

Ginny Maxwell, Director, Patient Advocacy
Lexington, SC
Telephone: 803.640.5769
Email: ginny.maxwell@prpAlliance.org

PRP Survival Guide

The PRP Survival Guide is an online repository of patient-reported experiences as reported by the PRP community. It  is offered as an alternative to unstructured and random searches by newly diagnosed PRP patients using Dr. Google, Dr. Yahoo and Dr. Bing. These efforts will almost always lead to frustration and frequently to misinformation.

If we do are job properly, you will either (1) find the answers you seek or (2) send the PRP Survival Guide editor out in search of answers to questions we haven’t asked. Eight chapters provide an organizational framework for PRP patients and caregivers:

✽  Basics
✽  Diagnosing PRP
✽  Treating PRP
✽  Daily Life
✽  PRP Parents and Children
✽  PRP & Remission
✽  PRP Research
 PRP Advocacy

PRP Facebook Support Group

Founded in April 2013, the membership in this Closed Group has grown steadily to nearly 1,100 with representation on every continent. Truely the “Land of Chat”, post a question and comments flood in. Need a hug, the huggers respond. Need a friend … there’s a community of fellow travelers ready to lend an ear or a shoulder. Need information … there are nearly 1,100 members who can share what works and what doesn’t for their unique version of PRP. We learn together. We are in this together.

PRP Community on RareConnect

The PRP Alliance supports RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. Established in April 2015, the PRP Community on RareConnect is a 200+ member, multi-language, non-Facebook option serving adults with PRP and the parents of children diagnosed with juvenile onset.

RareConnect provides a “safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.”

Genetic and Rare Diseases Information Center

The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.

The PRP Community advocated that all patients diagnosed with PRP should be routinly referred to GARD’s PRP Repost rather than Dr. Google, Dr. Yahoo and Dr. Bing.

National Organization of Rare Disorders

The National Organization of Rare Disorders maintains a Rare Disease Database to provide brief introductions to more than 1,200 rare diseases — including pityriasis rubra pilaris. These rare disease reports are primarily geared toward patients and families. There is also, however, an important secondary audience, e.g.,  physicians, researchers, nurses, students, journalists and others who might request and benefit from such rare disease information.

The PRP Report (circa 2017) has recently replaced the 2007 version.

 

2017 PRP Resources Survey

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.

SELECT the appropriate topic
When it comes to PRP, selecting the right topic is easy. Just about any topic applies to someone in our PRP family.

ASK the right questions. Asking the right questions can be a challenge. I have posted a number of surveys in the past four years and almost immediately wish I had asked one or two additional questions.

USE the information gathered Using the information is the easiest part of the equation. All the findings can be published in the PRP Survival Guide and shared with PRP patients, caregivers and the healthcare professionals who manage our treatment.

PRP Resources Survey

The PRP Resources Survey has concluded and here are the results:

(1)  To which support group(s) do you currently belong? (123 responses)

 PRP Facebook Support Group: 120 — 97.5%
✽  PRP Community on RareConnect: 44 — 35.7%
✽  PRP Support Group: 32 — 26.0 %

Objective: Increase the number of PRP patients and caregivers who are members of both the PRP Facebook and RareConnect communities. How close can we get to 66%

(2)  Have you visited the new PRP Survival Guide? (124 responses)

✽  Yes: 44 — 34.3%
✽  No: 80 — 62.5%

Objective:  Find ways to increase traffic from the PRP Facebook and RareConnect communities  to the PRP Survival Guide. A major push is in the works for PRP Awareness Month (November 2017)

(3) The PRP Survival Guide is divided into eight chapters. Please indicate the importance or relevance to each chapter to you.

 Important:  Chapters 5 (PRP Parents and Kids) scored lowest because PRP patients diagnosed with Adult Onset have no interest in issues related to those diagnosed with Juvenile onset. Conversely, all the other chapters are of interest to PRP parents and their children.
✽  Very Important:  Chapters 1, 2
✽  Critically Important: Chapters 3, 4, 6, 7, 8

Objective: Ensure that all eight chapters are developed as co-equals in importance.

The PRP Survival Guide is now working with Constant Contact to access their online marketing tools and other resources, including survey support. What topics would you like surveyed in the future?

2017 PRP Resources Survey 

PRP Survival Guide — Peer Review

From the Editor…

Abbas Virji, a retired GP living in London, England, was diagnosed with adult onset PRP in August 2016. As a Health Care Professional (HCP) he asks an important questions abut the content of the PRP Survival Guide.

✽  Has the PRP Survival Guide been peer reviewed and piloted?

✽  Has there been any input from an interested dermatologist?

The simple answer is YES. A more accurate answer would be that the PRP Survival Guide will have both Peer Review and HCP Review.

PEER REVIEW

Since the PRP Survival Guide is based on the experiences and insights of PRP patients and caregivers, I see peer review as the review by PRP patients and caregivers. The entire PRP community is invited to review any and all posts and PDFs made available via the PRP Survival Guide. Questions and comments can be shared using “Leave a Reply” on every webpage, Based on questions and comments, there will be appropriate copyediting to ensure than the content is accurate and complete.

HCP REVIEW

Similarly, every article is available for review by Health Care Professionals. It is important that the PRP Survival Guide be subjected to review by  benefit from review by dermatologists, specialists and general physicians.  While there is no expectation that a handful of HCPs will read everything, we are confident that every article will be reviewed by at east one HCP.

PRP MEDICAL ADVISORY BOARD

Theoretically, every dermatologist who is treating PRP is a de facto member of the PRP Medical Advisory Board. We only ask the following:

✽  Read the post or PDF

✽  Use “Leave a Reply” to Indicate that the post/PDF has been reviewed.

✽  When appropriate, add appropriate comments regarding ANYTHING related to the accuracy of the post/PDF.

✽  HCP comments will be incorporated in or amended to the post/article.

PRP Survival Guide — Peer Review

A Referral to Dr. Google

Disclaimer

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 should indulge in self-diagnosis or embark upon any course of medical treatment that is described in the PRP Survival Guide without first consulting a health care professional. [H00.00.00]