INDEX PRP Facebook Support Group

From the Editor
The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to harvest that knowledge for those in need of enlightenment.

Share what you have learned about PRP as a patient or caregiver. Share what you have been told by your dermatologist? Share articles  you feel might be worth reading or websites worth visiting. Please use “Leave a Reply” at the bottom of this webpage to answer the following question:

What do you want to know about the PRP Facebook Support Group?

INDEX PRP Facebook Support Group

2 Replies to “INDEX PRP Facebook Support Group”

  1. For those who are seasoned Facebookers, the PRP Facebook Support Group is relatively easy to find.

    Go to Facebook

    Click: “Search for people, places and things”

    Type: “Pityriasis Rubra Pilaris (PRP)” including the PRP within the parentheses

    Click: “Ask to join”

    The PRP Facebook Administrator will automatically accept your request. It is truly that simple. This is a “Closed Group” where the conversation focuses on all things PRP.

    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 over 1,000 members who can share what works and what doesn’t for their unique version of PRP. We learn together.

  2. Question: Do the PRP Facebook and RareConnect communities have rules?
    Answer: Just a few.

    When your PRP journey includes the PRP Facebook Community, there are a few Rules of the Road.
    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 20 comments for every post and well over 100 posts per month. You do the math.

    We have a motto: “People who care, share; People who share, teach.” We 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.

    We want to provide every PRP patient and caregiver with the resources to become a self-advocate for their own care and the care of everyone in the PRP community.Sometimes we need to become political and advocate in state legislatures and Congress. Sometimes we need to know how to apply for disability. And there is always a health insurance company spoiling for a fight.

    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.

    Videos & Posters
    The PRP Facebook Support Group is a “Closed Group” where members expect a sharp focus on all things PRP. Sometimes an uplifting video
    appears. Often the image dominates the computer screen or smart phone. Please post videos as the first comment to your initial post. If the topic is of interest, the member will seek it out. 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.

    Originallly Published in On the Road…October 2015

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