Editor’s Note: (1) Comments highlighted in boldface purple reflect the first 100 responses to the Onset to Diagnosis Survey, (2) There are links to “selected comments”. (3) Question #8 has be “tweaked” for clarity. . CLICK THIS LINK TO BYPASS THE PREVIEW AND GO DIRECTLY TO THE SURVEY YOU are being asked to make history. For our global PRP community, history […]
ON to DX Retrospective Study Read More »
From the Editor… The light has finally been turned on. As of September 20, the National Organization of Rare Disorders (NORD) has replaced the 2007 PRP Report with the 2017 revision. We now have a beacon of hope for PRP patients and caregivers to find as they travel the uncharted waters of pityriasis rubra pilaris.
Genesis of the NORD PRP Report Read More »
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? ✽
From the Editor I was diagnosed with pityriasis rubra pilaris (PRP) on November 28, 2012 — nearly three months after a red spot appeared on my forehead. Someone from my dermatologist’s office called me to confirm the diagnosis and to schedule an appointment for the following day. All she shared with me was the proper spelling of pityriasis rubra pilaris. That evening
How to Use the PRP Survival Guide Read More »
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 »