From Bill McCue, Editor
In 2008, Jonah Grant-Scarfe, a PRP sufferer from Canada, recognized the value of Facebook as a tool with which to share PRP-related insights and experiences with fellow PRP patients. The PRP Facebook Support Group didn’t immediately catch on. In fact, it took five years to reach the 100-member milestone.
Facebook provides access to basic analytics regarding membership, The tables below reflect the period January 1, 2019 through December 31, 2019.
Total Members
On January 1, 2019, the PRP Facebook Support Group began the new year with 1,436 members. The membership represented a combination of PRP patients, caregivers, supportive family and friends, and a handful of curious dermatologists.
There has always been a natural ebb and flow of members. Membership falls into three categories:
✽ Patients and caregivers who join for the “long haul” — often beyond remission.
✽ Concerned family, friends who join to “learn enough about pityriasis rubra pilaris” to be supportive of the PRP patient and/or caregiver.
✽ Dermatologists with a PRP patient who join for a limited time “just to learn about PRP from the patient perspective”.
By year’s end the PRP Facebook Support Group ‘s membership was 1,814, a 12-month net gain of 378 new members (7 per week). The takeaway here is the The PRP Facebook Community continues to grow.
It should be noted that 1,571 (86,6%) the 1,814 represents individual PRP patient profiles in the PRP Global Database. Worldwide, the PRP Global Database now contains 2,058 PRP patient profiles of both PRP Facebookers and non-members with a valid email address.
Membership Requests
The PRP Facebook Support Group is a CLOSED GROUP to (a) ensure privacy and (b) encourage members to participate with posts, comments and reactions.
A total of 602 requests to join the PRP Facebook Support Group were received during 2019. A total of 568 were approved and welcomed to the Land of Chat. Thirty-four requests, however, were denied when applicants appeared to be joining “for reasons other that learning about PRP”, e.g., selling products and services.
✽ 31 requests were declined “without prejudice”. This means that they could request membership again.
✽ 3 individuals were actually blocked from future requests.
Posts
“The Land of Chat” is a well-deserved moniker based on posts, comments and reactions. For example, each month an average of 155 posts are a catalyst for sharing the insights and experiences of PRP patients and their caregivers. There is always a question in need of an answer.
comments
While posts are may be the spark, comments are the wind that fuels the flames of communication. A monthly average of 2,387 comments do not include the replies that carry conversations hither and yon.
It took the old, email-based PRP Support Group from November 1997 to November 2013 (16 years) to amass 29,000 posts and comments. In 2019 — only one year — the PRP Facebook Support Group generated 30,506 posts and comments. It’s all about technology.
Reactions
Reactions reflect a member’s acknowledgement of a post, e.g., Like, Love, Haha, Wow, Sad, and Angry.. Each month an average of 3,559 “reactions” are shared.
All in all, 73,210 posts, comments and reactions tells a new member that they are not alone.
Active Members
In my humble opinion there are three types of members
✽ Engaged and visible: posts, comments and/or reactions. Half the membership can be categorized and engaged.
✽ Engaged from afar. These are members read posts, comments, and/or reactions but NEVER share. Hopefully they will benefit from the “sharings” they read.
✽ Lost Souls. There are members on the rolls who might never return to the Land of Chat. These members have put the PRP Facebook Support Group in their rear view mirror, have no intention to return, and have NOT deleted themselves from the Land of Chat.
Age and Gender
Since PRP is an equal opportunity rare disease favoring no one, the PRP Global Database does not track gender. Moreover, the member may or may not be the patient, in which came the gender statistic is moot.
Top CountrieS & TOP CITIES
With 1,373 members, the United States, United Kingdom, Australia and Canada currently represent 86% of total membership of the PRP Facebook Support Group.
Over the next 12 months the growth of the PRP Facebook Support Group should continue at it’s current pace. The 2,000-member goal by December 31, 2020 is within the realm of the possible.