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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Under Revision The word advocacy has been around for quite some time. ✽ Middle English and Old French advocacie ✽ Medieval Latin advocatia ✽ Classical Latin advocatus From the perspective of a patient diagnosed with pityriasis rubra pilaris, there are six levels of advocacy. But let’s start with a composite definition of advocacy. ✽ Advocacy is an act or process that
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Diagnosing PRP — The Advocacy Mission Editor’s Note: The timely and accurate diagnosis of pityriasis rubra pilaris is a goal shared by the PRP global community. We are confident that when a dermatologist suspects PRP and specifically instructs the dermatopathologist to look for evidence — a diagnosis supporting clinical observations is the result. Patient Self-Advocacy
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37. PRP Survival Guide. Chapter 7 — PRP Research. https://prpsurvivalguide.org/2017/05/21/chapter-6-prp-research/
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When a PRP patient looks up “pityriasis rubra pilaris in Google, DermNetNZ.org is typically #1 in the Top 10 of websites found. New Zealand is a country with with a population of 4.6 million and only 62 dermatologists. There is an estimated “active” PRP patient population of only 12. DermNet New Zealand claims to be “The world’s most popular online
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07.05.01 — British Association of Dermatologists British Association of Dermatologists (BAD)
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07.04.03 — Society for Investigative Dermatology Society for Investigative Dermatology (SID) Home The Society for Investigative Dermatology was born out of a vision to serve a segment of science previously unrepresented by the medical societies of the United States: investigative dermatology. The founders saw a need for an organization with a devotion to cutaneous investigation,
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07.04.02 — Society of Dermatology Physician Assistants Society of Dermatology Physician Assistants (SOPA) http://www.dermpa.org The Society of Dermatology Physician Assistants (SDPA) is a 501c6 non-profit professional organization composed of members who provide dermatologic care or have an interest in the medical specialty of dermatology. Its Fellow members are PAs who provide medical services with the
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From the Editor… There is a point in the creation of every organization where someone has to decide on the name. For me, the PRP Alliance was easy. Even the PRP Survival Guide was effortless. But who thought that the Center for Information and Study on Clinical Research Participation would even fit on a business card? And
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RDLA is a collaborative organization designed to support the advocacy of all rare disease groups. RDLA works to empower the individual to become an advocate by providing informational meetings, legislative resources, advocacy tools, and special events that support organizations and advocates working to promote rare disease legislation. The goal of RDLA is to bring the
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