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 […]
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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
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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
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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
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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
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Is there a cure for PRP? According to Merriam-Webster Dictionary, a CURE usually refers to a complete restoration of health, while TREATMENT refers to a process that leads to an improvement in health, but may not include the complete elimination of disease. The consensus among dermatologists is that there is NO CURE for pityriasis rubra pilaris. This
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 From the Editor…Rather than lament the forced hiatus of the PRP Survival Guide and watch Game of Thrones, I have decided to tweak “The Basics” a wee bit. Okay…more than a wee bit. To ancient Greeks and Egyptians the mythical Phoenix was a symbol of renewal and rebirth. While the magnificent Phoenix lived for
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From the Editor… The Genetic and Rare Diseases Information Center once again provides patient-friendly information. Their “coverage” of autoinflammatory Diseases meets that standard. The following information is dated January 2017. If you REALLY want to know about autoinflammatory diseases, this is worth a cup of coffee and some “Quiet Time”. Autoinflammatory diseases are a relatively
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What are the 6 types of PRP?  The initial five classifications of pityriasis rubra pilaris were presented to the British Association of Dermatologists in 2003 by Dr. Andrew Griffith, a well-respected London-based dermatologist. His classifications reflected 35 years of diagnosing, treating and researching PRP and have been universally accepted by dermatologists worldwide. According to Griffiths, the PRP patient population can
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