It’s time for me to resurrect the PRP newsletter. Twenty-four issues (an average of 24 pages per issue) were published between April, 2014 and October, 2015. It has taken me two and a half years to get myself to a point — mentally — where I can make another 24-issue commitment. The following webpage is an […]
A PRP Newsletter Reborn Read More »
The PRP community has long lamented the lack of research. Since October 2012, however, researchers at Thomas Jefferson University have been conducting ongoing genetic research. In 2014 their research efforts expanded to include clinical analysis. For all intents and purposes, TJU was the only game in town. ✽ What is the status of PRP Research? ✽
On May 9, 2018 — nearly two months ago — I posted messages to the PRP Facebook and RareConnect communities announcing that Dr. Teri Greiling, Assistant Professor of Dermatology at Oregon Health and Science University in Portland, Oregon, had been given the green light to treat 15 PRP patients with Taltz® (Ixekizumab, a biological manufactured by Lilly. I created a
PRP Research at OHSU Update: July 3, 2018 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 »
There is no excerpt because this is a protected post.
Protected: Lining Up Our Ducks 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 »
From the Editor… As a rule, PRP patients and caregivers are given the proper spelling of pityriasis rubra pillars, the acronym “PRP” and a referral to Dr. Internet. Some of us reach out to Dr. Yahoo. Others seek out Dr. Google. It doesn’t take long for us to learn that using PRP doesn’t work. Enter “PRP” and the
Asking Dr. Google? Read More »
From the Editor… Cami B (Pine City, MN) is participating in ongoing PRP research at Thomas Jefferson University. Misdiagnosed She received an email on June 13, 2017 requesting blood samples. from TJU researchers. The following day she went to the lab where the blood samples were taken. It was then off to the Post Office.
Shipping Blood Samples: Pine City to Philly Read More »
From the Editor… Prior to November 2013, there was no concerted effort by healthcare professionals or PRP patients to gather information about the PRP community. The first PRP Global Census was based on a mailing list extracted from over 29,000 emails archived by the PRP Support Group founded in 1997. As a member/subscriber to the PRP-L List, I was authorized
How do we track the Global PRP Community? Read More »