PRP Survival Guide

How to facilitate a referral to a patient organization

07.00.02 — We may have found a way to facilitate a referral to a support group from a PRP-savvy dermatologist
Why don’t dermatologists with patients diagnosed with PRP routinely refer those patients to the PRP Alliance, PRP Facebook Support Group and the PRP (email) Support Group?
✴Is it concern with regulations protecting patient health information?
✴Do they simply fail to realize or appreciate the important role we play as PRP patient advocates?
✴Do they even know we exist?
Enlightenment is the answer, and the PRP Referral Mug Program is the cornerstone of that effort. The program is HIPAA-compliant in the U.S. and will satisfy the concerns for privacy around the globe.
Start with your dermatologist!
The PRP Alliance has already begun placement of PRP Referral Mugs in the dermatology departments of teaching hospitals and private clinics. With each placement, a request is made of the dermatologist: “Please pass this PRP mug on to the next PRPer your department or clinic diagnoses or treats.”
The PRP coffee mug is imprinted with two message:
✴“You are not alone. We are in this together.”
✴Each one different. Each one special.
Theoretically, the PRP mug is given to a newly diagnosed adult PRPer or the parent of a newly diagnosed PRPer with juvenile onset. But just in case it ends up in the dermatologist’s office…
PRP Referral Information
There is a referral fact sheet placed in the PRP mug that provides the PRPer or parent with the following:.
“You have been diagnosed with pityriasis rubra pilaris, and you are exactly where fellow PRPers (that’s what we call each other) have been before you — in need of information and support.
“Patient privacy rules may prohibit your dermatologist from telling us your name, but you have been given the information to reach out to us at
prpAlliance.org
“The PRP Alliance also publishes a monthly newsletter called On the Road…the Journey from Onset through Remission and the online PRP Survival Guide.
prpAlliance.org/support
“The PRP Facebook Support Group has nearly 500 members who chat about every aspect of PRP you can imagine, whether you are an adult (Type 1 or 2) or a parent with a newly diagnosed child (Types 3, 4 or 5).”
PRPA Business Card
The final component in the PRP mug is a PRPA business card with all the contact information for the PRPer or parent to to reach us by phone, email or via the website.
As published in On the Road… August 2015

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