Objective To resurrect the PRP community’s original newsletter. A total of 24 issues (598 pages) of On the Road … Our Journey from Onset through Remission were published during the period April 2014 through October 2015. Problem to be addressed The PRP Alliance does not “push” information to the PRP community. We depend on PRP […]
PRP Newsletter Revival Read More »
Add Your Group Are you involved with a skin-patient support group? Would you like your group to be part of the CSPA network and benefit from everything belonging offers? Large or small, every group that is not-for-profit and patient-focused is welcome. Joining is free! Contact Diane Christin, Manager Stakeholder Relations at diane.christin@canadianskin.ca or 1-613-864-0745 to
Canadian Skin Patient Alliance Read More »
From the Editor… There are many advocacy activities that could lessen the burden of pityriasis rubra pilaris on PRP patient and caregiver worldwide. ❏½ Some advocacy efforts may be undertaken by one person; other efforts will require a group. ❏½ Some advocacy activities can be accomplished at no cost, others will require funding. ❏½ Some
Rare Disease Organization Advocacy Read More »
INDEX tattoos From the Editor 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 harvest that knowledge for those in need of enlightenment. Share what you have learned about
PRPSG Facebook Post — Tattoos Read More »
Whack! Whack! Whack! by Bill McCue 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, Connecticut. It had two small bedrooms, a living room and a small kitchen. My father turned half the basement into a workshop and laundry.
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From the Editor… The following is list of PRP patient and caregiver resources is destined for inclusion in the revision of the PRP Report maintained by the National Organization of Rare Disorders. It is currently being reviewed by members of the PRP community and will then be reviewed by an Editorial Advisory Board of dermatologists.
PRPSG Facebook Post — PRP Patient Resources Read More »
Standard Therapies Treatment of pityriasis rubra pilaris (PRP) is mainly based on reports of patients’ experiences. No controlled trials have been done, so the effectiveness and safety of treatments is unclear. Currently there are no treatments approved by the US Food and Drug Administration (FDA) or the European Medicines Agency (EMA) for use in PRP.
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From the Editor… I have been working on a revision of the PRP Report in the Rare Disease Database hosted by the National Organization of Rare Disorders. Writing about the “CAUSES” of pityriasis rubra pilaris is particularly challenging. Do we know what causes PRP? Much to the frustration of the PRP community, the answer is
Causes of PRP — An Overview Read More »
From the Editor… The National Psoriasis Foundation offers information on stress that may be applicable to pityriasis rubra pilaris. Here are some takeways: ❏½ Stress is a common trigger for a psoriasis flare. At the same time, a psoriasis flare can cause stress. ❏½ Woman, in particular, seem particularly vulnerable to stress due to psoriasis.According