04.51.02 What resources are available to PRP patients and their caregivers?
PRP (Pityriasis Rubra Pilaris) Answers
In April 1, 2014, the PRP Survival Guide was officially launched. The objective was to provide a repository of easy-to-access information specifically related to the onset, diagnosis, treatment, remission and/or maintenance of pityriasis rubra pilaris. The PRP Survival Guide reflected the PRP-related experiences as reported by patients and their caregivers.
In January 2017, the server hosting the PRP Survival Guide imploded. Nearly 500 articles and 300 associated images we lost. The backups were also lost. On April 1, 2017, PRP Answers rose from the ashes like a mythical Phoenix. LINK
PRP (Pityriasis Rubra Pilaris) Facebook Support Group
Established in April 2013, the ever-increasing membership asks questions pertaining to the treatment of pityriasis rubra pilaris and its symptoms — from onset through remission. PRP Patients and their caregivers share personal experiences and insights. Nearly 900 members have created a channel of communication within the worldwide PRP Community. LINK
PRP (Pityriasis Rubra Pilaris) Community on RareConnect
Launched in April 2016, nearly 200 members are afforded the opportunity to document their PRP journeys for member-only review. While PRP Facebookers generally tell and re-tell portions of their journey as it applies to a specific question, the RareConnect format allows for the telling and updating of PRP testimonials. There is also the site of the “official” PRP Worldwide Map. LINK
PRP (Pityriasis Rubra Pilaris) Research Initiatives
Currently, patients diagnosed with PRP are being encouraged to consider participating in the ongoing research being conducted at Sidney Kimmel College of Medicine at Thomas Jefferson University. In the not-too-distant future, TJU hopes to build a comprehensive PRP Patient Registry to better understand the cause and/or triggers of PRP, its timely diagnosis and effective treatment. LINK