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
A PRP Newsletter Reborn Read More »
From the editor… Every so often I lament the fact that after (or in spite of) six years I have been unable to create or inspire a community of PRP parents within the PRP Facebook Community. That doesn’t stop me from raising the issue again in hopes that a Coalition of PRP Parents & Kids
Coalition of PRP Parents & Kids Read More »
Editor’s Note: Each month members of the PRP Facebook Community start between 150 and 200 conversations that range from questions about “what works and what doesn’t work” to general appeals for advice. Since the start of PRP Awareness Month (November 1, 2018), well over 1,200 PRP Facebookers in the Land of Chat have been living
Second Look — April, 2019 Read More »
From the Editor… A milestone is defined as “an event or achievement that marks an important stage in a process.” PRP patients and caregivers know about milestones. We already celebrate important milestones in our journey from onset through remission. ❏½ Ability to sweat ❏½ Return of fingernails to pre-onset glory ❏½ Return of hair ❏½
PRP Facebook Membership Milestones Read More »
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
How to Use the PRP Survival Guide Read More »
The PRP Alliance is working with RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. The PRP Alliance is a member of NORD and supports the PRP Community on RareConnect – a multi-language, non-Facebook option for adults with PRP and the parents of children diagnosed with juvenile onset. RareConnect
The PRP Community on RareConnect Read More »
Updated: 06/19/2020 Message from the Editor The onset of my version of PRP began in early August 2012 with the sudden appearance of a small, red spot on my right temple near my hairline. Within a week the “inconsequential” spot had grown in size – enough to prompt a call to my dermatologist. By early
PRP Community Resources 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 »
Thank you for sharing your information. Bill McCue, Founder/President PRP Alliance, Inc.
Thank You For Being Counted Read More »