papabill

Editor’s Note: The following table details the PRP patient population in the United States based on 836 PRP patient profiles maintained in the PRP Global Database as of April 30, 2019. STATE PRP PATIENT PROFILES A Alabama 13 Alaska 1 Arizona 23 Arkansas 8 C California 101 Colorado 16 Connecticut 9 D Delaware 3 District of […]

Editor’s Note: This webpage focuses on the PRP Global Database, the PRP-related data we capture, and why the data is important to every member of the PRP community. Whether you are a patient, loving caregiver (spouse, partner, or parent), an extended family member, friend or a healthcare professional, the data we have amassed in the PRP Global Database helps us all

From the Editor When we think about the treatment of pityriasis rubra pilaris, we think retinoids, immunosuppressants, biologicals or no meds at all. Every so often a new members asks about the efficacy of prednisone and the Land of Chat comes alive. Initially posted in December, 2018, it occasionally “pops up” when someone stumbles upon it. Of

PRP Awareness Month is an opportunity for the worldwide PRP Community to show solidarity. While every diagnosis of pityriasis rubra pilaris results in a unique journey, we all face — or have faced — the daily challenges of body, mind, and spirit. PRP Awareness Month is an opportunity for the worldwide PRP community to show

Are you a “Newbie” or “Seasoned Traveler” on our journey from onset to remission? Are you a patient or caregiver facing the daily challenges of body, mind and spirit? Are you part of an extended family or a friend who wants to understand and offer support?  The following list of PRP-related resources should be shared with those who care. Remember… What works

From the Editor… I have been in communication with Dr. Jason Sluzevich from the Mayo Clinic in Jacksonville, FL. He is the principal investigator for a PRP study. Dr. Sluzevich writes: “This study is being done to evaluate whether Cosentyx can improve the signs and symptoms of PRP in ADULT ONSET patients. This study will

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