From the Editor… There may be a place for music in the treatment of pityriasis rubra pilaris — music that brings peace and solace to the PRP community. This page is an experiment to see what “inspiration” comes our way. If music can soothe the soul, what music might others share. WARNING: Apologies in advance if […]
Sometimes we need to “Give a Listen” Read More »
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… 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
Efficacy of Whole Body Cryogenics Read More »
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
Patient Registries F Read More »
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,
Patient Registries E Read More »
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
Patient Registries C Read More »