HOLD FOR RELEASE Pityriasis rubra pilaris (PRP) is a rare skin disease of unknown etiology, which medically is often difficult to treat. For a patient with PRP, the disease can completely alter one’s ability to work and attend school. Quality of life is often greatly reduced, and many patients experience profound psychological impact due to […]
Joint PRP Study Announced Read More »
Editor’s Note: Before we start — have you completed your PRP Patient Profile yet? Go directly to: https://conta.cc/2IOBEUA or learn why your PRP patient profile is so important. There have been two recent questions, each embedded in an unrelated post. PRP Facebookers: Leith W (Queensland, Australia) and Marilyn C (Irvington, AL) asked: How do I find
How do I find my type? Read More »
From the Editor… Nearly two years ago (May 17, 2017) I received an email from Dr. Teri Greiling, Assistant Professor of Dermatology at Oregon Health and Science University in Portland, Oregon. Like every PRP patient and caregiver, Dr. Greiling lamented the fact that not a single therapeutic trial had ever been conducted for patients with PRP. She also
OHSU Studies PRP and Taltz (ixekizumab) Read More »
October 2, 2024 AN URGENT MESSAGE TOALL MEMBERS OF THEPRP FACEBOOK GROUP With no warning, Facebook removed our group. I immediately appealed. Within a few hours my appeal was summarily denied and our PRP Facebook Group vanished. Nearly 2,400 members lost access to important healthcare information. We have established a PRP Facebook Group v2.
New Member Orientation Facebook Read More »
During the first 15 days of our 45-day campaign to update 1,000 PRP patient profiles, we reached out to 1,607 patients or caregivers. The good news — we are one-third of the way to reaching our goal. The first observation worthy of note is that 75% of those who have responded thus far are members of the PRP
We are all a piece of the PRP puzzle Read More »
WHY DO WE NEED YOUR PROFILE? As patient advocates an ultra-rare skin disease, the PRP community — individually and collectively —cannot depend on healthcare professionals, pharmaceutical companies and other third parties to organize us. It is our responsibility! The PRP community is uniquely positioned to gather the “core data” that teaching hospitals need to recruit
FAQs — PRP Patient Profile Update Read More »
by Bill McCue, Founder & President, PRP Alliance, Inc. A little bit of history… When I was diagnosed with adult onset PRP on November 28, 2012, I immediately joined the PRPSupport Group and subscribed to their email-based forum. As a newcomer to that group, I was frustrated by the lack of response to the questions I posted.
PRP Community Database Update Grant Read More »
. Editor’s Note: Regardless of the worthiness of any cause, you have a right say “No”.It’s very easy to say “No” when a stranger knocks on your door. Whatever they’re selling, we’re not buying. Let’s face it — we’re all getting pretty darn good at saying “No”. In fact, for most of us, “No” has become
The Right to Say “NO” Read More »
The effort to update the PRP Community Database began on April 13, 2018 and has been returned to the front burner for PRP Awareness Month (November 2018). The objective was to confirm patient locations, email addresses, onset dates and onset ages, and the current status of PRP patients — young and old — worldwide. Thank
Thank you for updating… Read More »
From the Editor… Statistically, there are only 813 “active” PRP patients in the US. While we consider ourselves to be über rare, we are not unicorns. One of the goals of PRP Advocacy is to rise above the noise level. While we will NEVER be conspicuous in our absence, I just want the PRP community
AAD Posts PRP Family Video Read More »