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.