From the Editor Much to the frustration of the PRP community, the answer is “No”, although genetic factors, an abnormal immune response, or vitamin A deficiency may be involved. Based on conversations within the PRP community, we can say with metaphysical certitude that PRP isn’t a punishment for misbehavior or forgetting to put the seat […]
Do we know what causes PRP? Read More »
Editor’s Note… On November 22, 2017, Sharyn B (Gold Coast, Queensland, Australia) posted the following message to the PRP Facebook Community. Members can CLICK HERE see the original, unedited version of Sharyn’s post and feedback. “I’ve been told to moisturise at least three times a day. I don’t shower everyday (which is excruciating as i
When moisturizers cake Read More »
From the Editor… If pityriasis rubra pilaris is, in fact, an autoimmune disease, then joining the American Autoimmune Related Diseases Association would seem like an appropriate path forward. It was on this basis that I approached the AARDA in 2015 intent upon having the PRP Alliance become a member organization. It became clear, however, that
Is PRP Autoimmune or Autoinflammatory? Read More »
From the Editor – I began writing the PRP Survival Guide in November 2013. At first I collected information readily available on the internet which was, unfortunately, redundant, incomplete and too often written for an audience of healthcare professionals. By April 2014 it had become apparent to me that original articles needed to be developed
PRP Survival Guide Needs Assessment Read More »
The mid-November issue of the PRP community newsletter was just emailed to 1,009 PRP patients/caregivers. If you didn’t receive an email from me, then (1) you either don’t have your email address listed in the PRP Community Database, (2) or the email address we have is undeliverable, or the newsletter ended up in “junk mail”.
Mid-November Issue of On the Road… available Read More »
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
PRP and Workplace Strategies Read More »
Have you received a genetic diagnosis? Now is the time to GET DIAGNOSED and join FIRST in playing an important role in ichthyosis research. FIRST is co-sponsoring a transformational scientific endeavor with one of the world’s leading institutions in ichthyosis research, Yale University. We encourage you to take part. The National Registry for Ichthyosis &
Ichthyosis Registry Read More »
Welcome to the ReadyTalk Meet & Greet Scheduler. The PRP Alliance has arranged for a 14-day Free Trial of ReadyTalk, a video conferencing platform similar to GoToMeeting but more user friendly. The plan is to facilitate online gatherings where PRP patients and caregivers can meet, greet and chat. Based on the response, we ill schedule
ReadyTalk Meet & Greet Planner Read More »
What is the Basic Problem to be Solved? When a patient is diagnosed with pityriasis rubra pilaris (PRP), the dermatologist – with very rare exceptions – does not refer their patient to the PRP Alliance, PRP Survival Guide, PRP Facebook Support Group, or the PRP Community on RareConnect. Typically, the patient is referred to the
Rare Skin Disease Referral Initiative Update Read More »
From the Editor… With the support of the National Institutes of Health and the Foundation for Ichthyosis & Related Skin Types (FIRST), Yale University School of Medicine is building the first patient registry for ichthyosis and related skin types. A patient registry is the cornerstone of research. Investigators researching PRP, for example, will have access
Yale University Commits to PRP Patient Registry Read More »