THE OBJECTIVE OF THE REGISTRY With a prevalence rate of one in 400,000, pityriasis rubra pilaris is an ultra rare skin disorder. It has been estimated that only 1 out of 20 dermatologists will ever have one of us as a patient. The Registry of PRP-savvy dermatologists will be an online resource for PRP patients […]
Registry of PRP-savvy Dermatologists Read More »
For Those Who Opted Out . . . I sincerely hope that your PRP journey is over and you have taken the off ramp to REMISSION. Even though PRP is in your rear view mirror, please remember that an array of PRP-related resources are always available through the PRP Survival Guide. For Those Who Opted
Opt In, Opt Out — Thank You Read More »
x From the Editor… Let’s face it … dermatologists know more about psoriasis, atopic dermatitis, and other common skin disorders than they do about pityriasis rubra pilaris. Even more disconcerting is the fact that when a patient is diagnosed with PRP, dermatologists rarely make a referral to support resources, e.g., PRP Survival Guide, PRP Facebook
From an Initiative to a Registry Read More »
From the Editor… With the publication of my article in September issue of The Dermatologist (Rare Disease Patients A Need Roadmap), the PRP Community can now begin the outreach campaign that has been nearly a year in the making. Here’s the plan and how YOU can help. ❏‰ An effort will be made to reach
Rare Skin Disease Referral Initiative Outreach Read More »
Editor’s Note When I was diagnosed with pityriasis rubra pilaris on November 27, 2012, I was entering my fifth month of angry skin, escalating pain, and profound hopelessness. It took two dermatologists, a week of hospitalization, and four biopsies before I was on the right road, albeit a steep and hazardous mountain. Over the past
Rare Skin Disease Referral Initiative Read More »
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Protected: Thinking Out of the Box Read More »
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Protected: UCLA PRP Survey Confirmations Read More »
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Protected: Posting an Article in the Survival Guide #2 Read More »
There has never been a WORLDWIDE SCIENTIFIC SURVEY of 1,000 PRP patients! … until now. On July 29, 2018, over 1,100 PRP patients (or their caregivers) were invited to participate in the UCLA PRP Survey. While 418 (41%) opened the email, only 128 clicked the link to the UCLA PRP Survey page. Said another way:
As an ultra-rare skin disorder, PRP must find allies to open doors. How can the PRP community most effectively impact improvements in the diagnosis, treatment and research for PRP? Some basic questions… What is a patient advocate? What is a PRP advocate? What are the advocacy Issues? ❏½ PRP Advocacy Agenda – June 2017 With
ARCHIVE PRP Advocacy Read More »