New Member Orientation

From the Editor…

Tierney Ratti is a PRP veteran. Her journey began in 1972 at the age of 11 with the onset of pityriasis rubra pilaris. She was one of the original “Pretty Red People” who traded emails on AOL — You’ve Got Mail. Inspired by Jean-Luc Deslauriers, a Canadian, the original PRP Support Group was formed. Membership has ebbed and flowed over the past two decades. Using list-serve technology, members traded an average of 150 emails each month.

In 2008 another Canadian and PRP sufferer, Jonah Grant-Scarfe,  recognized the value of Facebook as an alternative to trading emails. While the PRP Facebook Support Group didn’t catch on, there were 120 members by November 2013. That’s when Tierney took over as Administrator.  When the number of posts (threads) hovered around 60, there were thousands of comments. Seasoned “Facebookers” were beginning to understand and appreciate of Facebook technology. Today, membership continues to ebb and flow — but there is more flowing than ebbing. Each month 30 new members join. By year’s end we hope to have 1,500 members.


As a new member, there are some common sense guidelines to consider.

Posts & Comments

The PRP Facebook Support Group is built on a solid foundation of questions (posts) and answers (comments). Any topic is fair game if it is related to the PRP experience. On average there are over 10 comments for every post and well over 110 posts per month. You do the math.

Sharing

We have a motto: “People who care, share; People who share, teach.” New members quickly learn that what works for some does not for all. We share both the milestones of healing and the disappointment of a flare. We offer shoulders to cry on and partners for your Dance of Joy when someone announces a healing milestone.

Religion & Hugs from Afar

For those who want to invoke a Higher Power, the PRP Facebook Support Group is a venue of tolerance. Some of us pray, some hug, some just think good thoughts. Within the PRP community, goodwill comes in a variety of flavors.

Social-Political Issues

Other than the legalization of marijuana for medical purposes, and issues related to the Federal Drug Administration, step therapy, access to affordable treatment options and funding for the National Institutes of Health — the PRP Facebook Support Group focuses on PRP.

Videos & Inspirational Posters

The PRP Facebook Support Group is a “Closed Group” where members expect a sharp focus on all things PRP.  Please post “uplifting” videos as the comment to a post rather than as the post. The goal is to minimize visual clutter.

Unauthorized Selling 

The PRP Facebook Support Group is not a captive audience for marketers of sunglass and other products and services. Our members will blow the whistle on any charlatan seeking financial gain at our expense. Revocation of membership is swift. Everyone is on high alert. As Administrator, Tierney has her legendary DELETE button to protect members.


Lining up your ducks

As time permits, learn about the resources available to you as a member of the PRP Facebook Support Group

1.  PRP Community Database

Over the past five years, the PRP Community Database has become the most complete representation of the PRP experience in the world and includes: onset date and onset age for over 1,200 PRP patients worldwide. It is important that every PRP patient, whether “active” or “in remission” update their PRP Patient Profile. LEARN MORE

 

2.  Genetic and Rare Diseases (GARD) Inforation Center

GARD, a program of the National Center for Advancing Translational Sciences, is funded by the National Institutes of Health. The office supports a variety of programs to serve the needs of patients who have any one of approximately 7,000 rare diseases known today. Their rare disease database includes information on each of 597 rare skin diseases including a recently updated overview of PRP. The GARD PRP Report is is a “Must Read” for every PRP patient and caregiver.

3.  National Organization of Rare Disorders

On September 20, 2017, NORD replaced the 1,500-word PRP Report (circa 2007) with a significantly more comprehensive, 5,000-word  2017 revision developed by the PRP Community. the NORD PRP Report is written in lay language and a “Must Read” for every PRP patient and caregiver.

4.  PRP Survival Guide

Since its launch in 2013, this ever-expanding repository of information now includes over 400 PRP-specific articles written in lay language on topics specifically related to the diagnosis and treatment of PRP as reported by PRP patients and their caregivers. Here’s a good place to start:  “How to use the PRP Survival Guide”

5.  PRP Community in Rare Connect

Established in April 2015 as an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. the PRP Community on RareConnect is a 260+ member, multi-language, non-Facebook option serving adults with PRP and the parents of children diagnosed with juvenile onset. Learn more at PRP Community on RareConnect

6.  PRP Alliance    

From a domain name registered in February 2013, the PRP Alliance has evolved as a nonprofit, patient advocacy organization with a mission is to advocate 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. Learn more about the PRP Alliance