A black and white logo of the word allies.
AN IMPORTANT MESSAGE FOR PATIENTS DIAGNOSED WITH PITYRIASIS RUBRA PILARIS (PRP) WHO ARE SEEKING THE PRP SUPPORT GROUP. PLEASE USE THE FOLLOWING LINK. ANSWER THE TWO QUESTIONS AND YOUR REQUEST TO JOIN NEARLY 1,000 “KINDRED SPIRITS” WILL BE APPROVED IMMEDIATELY.  
https://www.facebook.com/groups/1055476976361999
 

I have an idea.

I believe that this idea could make a significant difference in the journeys of many PRP patients.
How many? I don’t know, but I want to find out.
My idea is based on TWO very successful models for patient support each with a track record for over 10 years.
  • National Psoriasis Foundation (NPF)
  • International Pemphigus & Pemphigoid Foundation (IPPF)
1.  NPF NAVIGATION CENTER
  • The National Psoriasis Foundation (NPF) launched their Patient Navigation Center in 2016 to provide personalized support and educational resources to over 8 million individuals affected by psoriasis and psoriatic arthritis in the U.S.
  • Over the past decade, professional Patient Navigators have provided support to over 85,000 psoriasis patients.
  • It would be my intention to replicate the scope of support for PRP patients and their care partners. LINK TO NPF
2.  IPPF PEER COACH PROGRAM 
  • The International Pemphigus & Pemphigoid Foundation’s most important objective is to provide patients with information about pemphigus and pemphigoid
  • The Peer Coach Program offers the opportunity to communicate with specific members of the IPPF community.
  • Peer Coaches are volunteers who have learned how to manage their own diseases. They willingly share their insights and experiences as well as access to IPPF resources and educational materials.
  • It would be my intention to replicate the scope of support for PRP patients and their care partners. LINK TO PPPF

The immediate challenge I face is to prove the following to myself and others like you:
  1. There is a need for a PRP Patient Navigator AND a yet-to-be determined number of PRP Peer Coaches.
  2. I can replicate or even improve upon what Patient Navigators do for psoriasis patients and Peer Coaches do for pemphigus and pemphigoid patients.

More information to follow
on November 1, 2015