July 2017

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

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

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.

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.

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.