PRP Alliance

PRP Alliance

Diagnosing PRP

Diagnosing PRP — More Stuff to Ponder

What is a Medical Diagnosis? A MEDICAL DIAGNOSIS is based on information from sources such as findings from a physical examination, an interview with the patient or family or both, a medical history of the patient and family, and clinical findings as reported by laboratory tests and radiologic studies. A differential diagnosis is a process of weighing the probability […]

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RDB — Diagnosis

From the Editor… From the perspective of a PRP patient or caregiver, the definition of DIFFERENTIAL DIAGNOSIS is: Any alternative diagnosis that precedes the enlightened diagnosis of pityriasis rubra pilaris. The PRP community is painfully aware of the challenges faced by both dermatologists and dermatopathologists in the timely diagnosis of PRP. (1)  What symptoms are visible to

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AARDA does not considers PRP an autoimmune disease

From the Editor… If pityriasis rubra pilaris is, in fact, an autoimmune disease, then supporting the American Autoimmune Related Diseases Association would seem like an appropriate path forward. It was on this basis that I approached the AARDA in 2015 intent upon having the PRP Alliance join.  It became clear, however, that it was the view

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Understanding Autoinflammatory Diseases — GARD

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 SIX “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 be divided into two categories based on the

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Asking Dr. Google?

From the Editor… As a rule, PRP patients and caregivers are given the proper spelling of pityriasis rubra pillars, the acronym “PRP” and a referral to Dr. Internet. Some of us reach out to Dr. Yahoo. Others seek out Dr. Google. It doesn’t take long for us to learn that using PRP doesn’t work. Enter “PRP” and the

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Advocacy issues related to diagnosing PRP

Editor’s Note: The timely and accurate diagnosis of pityriasis rubra pilaris is a goal shared by the worldwide PRP community. As a global community we are  confident that when a dermatologist suspects PRP and specifically instructs the dermatopathologist to look  it — a diagnosis  supporting clinical observations is the result. Grand Rounds We have no choice but

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What is the ORPHA number for pityriasis rubra pilaris?

Orphanet maintains the Orphanet nomenclature of rare diseases, essential in improving the visibility of rare diseases in health and research information systems: each disease in Orphanet is attributed a unique and stable identifier, the ORPHA number. Orphanet uses the European definition of a rare disease, as defined by the European Union Regulation on Orphan Medicinal

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