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New Topic to Develop ❏  FINANCIAL ASSISTANCE❏  COST OF HEALTHCARE   From the Editor The PRP Survival Guide is designed to be 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. Only we are best positioned to harvest that knowledge. Share what […]

  FROM THE EDITOR The Lion’s Share of information presented in PRP 101 comes from Land of Chat posts and comments. The purpose of “In the Queue” is to provide a staging area for the collection and processing of PRP patient and caregiver sights and observations. The post(s) listed below are “In the Queue” for content development

Issues related to ears and hearing The PRP Survival Guide is designed to be 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. Only we are best positioned to harvest that knowledge. Share what you have learned about PRP, ears and

  From the Editor One of the many frustrating aspects associated with pityriasis rubra pilaris is reflected in the following mantra: “What works for one doesn’t work for all.†Over the past few years, however, I have taken the opportunity its to amend the Treatment Mantra to reflect a more positive reality: “What works for one doesn’t work for all,but if

Accept the fact: We are fragile. How is malware related to PRP and coping strategies?  Let me try to explain. By the way — reading this article will NOT cause a malware attack. It was a dark and stormy night (two weeks ago) when a member of the PRP Facebook Support Group posted a question about the efficacy of

The GARD PRP Report The PRP Report is published by the Genetic and Rare Disease (GARD) Information Center. This “Translation Version†uses Google Translate functionality is to accommodate PRP patients and their caregivers who prefer a language other than English. — Editor Pityriasis rubra pilaris Summary Pityriasis rubra pilaris (PRP) refers to a group of skin

STANDING UP FOR YOUR HEALTH On June 3, 2015, the PRPA Alliance participated in a conference call arranged by the National Organization of Rare Disorders (NORD) that included an announcement by John Huber, executive director of the Aplastic Anemia & MDS International Foundation (AA&MDSIF). Supported by a grant, John’s organization had been working on a

PRP Patient Resources From the Editor — The following resources should be shared with your dermatologist during your next clinic visit. He or she should be encouraged to share the information with other PRP patients. PRP Alliance    After registering the domain name (prpAlliance.com) in February 2012, it took another five months to launch a

How to tell your story Whether you are a patient or caregiver, you should be prepared to tell your story to others? When your audience is a loving member of your family, appreciate the fact that they care. You control the narrative.  When telling the story of your PRP journey, NEVER begin with “Once upon

Do we know what causes PRP? To the never-ending frustration of the PRP global community, we do not know what causes PRP. We suspect, however, that genetic factors, an abnormal immune response, or vitamin A deficiency may be involved. There is simply insufficient data on which to base a conclusion. What we can say with