From the Editor… When a member of the PRP Facebook community asked about cryotherapy as a way to provide relief from pain and itch, I conjured a vision of my dermatologist with the “Cryo Gun” he uses to ZAP potential skin cancer targets.  How could that reduce pain and itch? Then I saw the image of a patient in […]
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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
Clothing — Delasco Read More »
From the Editor… Statistically, there are only 813 “active” PRP patients in the US. While we consider ourselves to be über rare, we are not unicorns. One of the goals of PRP Advocacy is to rise above the noise level. While we will NEVER be conspicuous in our absence, I just want the PRP community
AAD Posts PRP Family Video Read More »
Issues related to lips and lip care The PRP Survival Guide is 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. We need to harvest that knowledge for those in need of enlightenment. The image of a desert seemed
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
PRP Feedback: Eyes & Impaired Vision Read More »
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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https://rarediseases.org/wp-content/uploads/2015/05/BioCentury-pg5-6.pdf CHARTING RARE STARS BY EMILY CUKIER-MEISNER, SENIOR WRITER A databank constructed by the National Organization for Rare Disorders and the VHL Alliance could serve as a model for how patient organizations can generate natural history data to help speed development and FDA review of new treatments. The Cancer in Our Genes International Patient
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https://blogs.fda.gov/fdavoice/index.php/2014/10/the-more-we-know-about-rare-diseases-the-more-likely-we-are-to-find-safe-and-effective-treatments/ The more we know about rare diseases, the more likely we are to find safe and effective treatments Posted on October 23, 2014 by FDA Voice By: Janet Woodcock, M.D. You may be inclined to think that rare diseases affect only a tiny fraction of the more than 320 million people in our country. That’s true about
Patient Registry B Read More »
NORD-FDA Natural History Study Project Page NORD is partnering with disease specific advocacy organizations to launch patient-centered registries to gain a better understanding of rare diseases. The registries will allow patients around the world to share relevant data, connect with researchers, and support research on how variables such as diet, exercise, environmental factors and other
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