From the editor… Every so often I lament the fact that after (or in spite of) six years I have been unable to create or inspire a community of PRP parents within the PRP Facebook Community. That doesn’t stop me from raising the issue again in hopes that a Coalition of PRP Parents & Kids […]
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PRP by Greg Shalless (PRP Onset January, 2008. Duration: Two years) Pityriasis Rubra PilarisI don’t want to sound too alarmist,But your skin turns bright redAnd in layers is shed –Who needs this kind of catharsis? It happens when you’re quite matureAnd you lose any sense of allure,It will no doubt cause tearsAnd be with you
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From the Editor… The PRP Alliance utilizes the email technology developed by Constant Contact. They manage our email list, facilitate email distribution and provide the support for email design. No one is forced to be on the PRP Community Email List. You can unsubscribe at the bottom of any email you receive. It’s that simple. But keep
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The following datapoints represent the “core” data collected via the PRP Worldwide Census. With this information we can build a more accurate profile of the PRP community. ✽  Elapsed time between onset and diagnosis ✽  Elapsed time between onset and remission ✽  Onset age by decade of life ✽  Misdiagnoses ✽  Biopsies as a diagnostic tool ✽  Survey PRP patients in remission ✽  Survey PRP children
What is “Core” Data”? Read More »
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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From the Editor… The National Psoriasis Foundation offers information on stress that may be applicable to pityriasis rubra pilaris. Here are some takeways: ✽  Stress is a common trigger for a psoriasis flare. At the same time, a psoriasis flare can cause stress. ✽  Woman, in particular, seem particularly vulnerable to stress due to psoriasis.According
From the Editor… On January 26, 2017, Jan T (Ringwood, NJ), posted a message to members of the PRP Facebook Support Group regarding clothing.  The feedback she received is well worth including in the PRP Survival Guide. I have attended three annual meetings of the American Academy of Dermatology (Denver, San Francisco and Orlando). Delasco always has
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From the Editor… From time to time, PRP patients and caregivers will share insights regarding eye, vision and the need to access an opthamologist  for educational purposes only and not for the purpose of rendering medical advice. It is not the intention of the PRP Survival Guide to provide specific medical advice, but rather to provide users with information
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NORD-FDA Natural History Study Frequently Asked Questions What is the NORD Registry Program? The NORD Registry Program is a compilation of services that assist member organizations through all the steps of developing, launching and running a Registry. What is the NORD Natural History Study Database Project? The NORD Natural History Study Database Project is one
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Jan. 15, 2015 TOPIC: Research Registries for Rare Diseases: Involve the Patient Registries for Rare Diseases: Involve the Patient Posted by Jennifer Huron In a new interview with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children’s National Medical Center in Washington, D.C. and NORD board member, talks about the importance of patient registries for rare diseases,
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