7-PRP Advocacy

There has never been a WORLDWIDE SCIENTIFIC SURVEY of 1,000 PRP patients! … until now. On July 29, 2018, over 1,700 PRP patients (or their caregivers) were invited to participate in the UCLA PRP Survey. You have the opportunity to share what you know about your version of PRP — what worked and what didn’t work […]

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 a grassroots advocacy effort. STEP ONE: Read the article It is important that you understand what we are trying to accomplish. With very few exceptions, dermatologists do not routinely refer

Every year since 2013 (year #2 of my own PRP journey), I try to make something special happen during November in an effort to build PRP awareness. There are six tasks on my to-do list for 2018: ≠ Update PRP Patient Profiles ≠ Identify PRP-Savvy Dermatologists ≠ Solicit participation in the UCLA PRP Survey ≠ Solicit participation in the

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 and their caregivers

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 In . . . Thanks for staying engaged.

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 Support Group, or the PRP Alliance.

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. â‰Â  An effort will be made to reach out to

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 eight years