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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 […]

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

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

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

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

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,

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

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

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