Protected: 60-Second PRP Roapmap
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owens
In Memoriam Editor’s NoteI received a telephone call from Suzanne Owens on July 25 with sad news. Her husband of 57 years, Ed, had passed away one day earlier. She was calling because her family wanted to direct contributions in Ed’s memory to the PRP Alliance in lieu of flowers. Both Suzanne and Ed had joined …
Whack! Whack! Whack!
Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Bill McCue (Plano, TX) Whack! Whack! Whack! by Bill McCuey Bill NcCue When I was in 4th grade (circa 1956), my mother, father, brother and I moved to a small, World War II vintage house in Bristol, …
Issues related to PAIN
Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Issues Related to PRP and PAIN The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to …
QOL Research at OHSU
Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Abstract Background Pityriasis rubra pilaris (PRP) is a rare and often severe inflammatory skin disorder with major detriment to patients’ quality of life. While past studies have described in detail the morphologic and histopathologic presentations of PRP, …
Estimated versus Actual PRP Patient Population—US
THE QUESTION Carolyn D (Willis, Texas) authored the following post (dated January 20, 2023) to members of the PRP Support Group: “Is there any data on how many PRP patients there are now in the world? Just curious. When I tell people about PRP they sometimes ask how many there of us.” Member-only link to …
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Biologicals: FDA First Approval Data
Biologicals — FDA First Approval Dates Editor’s Note — Lise D (Denmark) posted the following lament to the PRP Support Group: “I wish it were easier to find out which [biological medications] are older or newly developed.} The following is a list of biologicals prescribed to, or considered by, PRP patients. The list is alphabetized …
PRP Show and Tell
A Letter to Isabelle’s School Editor’s Note: On December 17, 2021, Nicole Campbell, mother of Isabelle, shared the following letter with the PRP Support Group. She wrote: “I have written our daughter’s school an informational letter on her PRP, we are just starting out as she was diagnosed just a few weeks ago so we …
What’s Important?
The following webpage provides an overview of what is important about each question presented on the BASIC webpage. These are the “takeaways” you should have you in your metaphorical toolbox when dealing with family, friends and even dermatologists. As your PRP journey continues, you will become a Subject Matter Expert (SME) when you want to …
PRP Global Database
PRP Global Database — 2022 Update Editor’s Note: This webpage focuses on the PRP Global Database as of January 31, 2020. The PRP-related data we capture is important to every member of the PRP global community. Whether you are a patient, loving caregiver (spouse, partner, or parent), an extended family member, friend or a healthcare …