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General The PRP (Pityriasis Rubra Pilaris) Alliance website is designed for educational purposes only and not for the purpose of rendering medical advice. It is not the intention of the PRP Alliance website to provide specific medical advice, but rather to provide users with information to better understand their disease and treatment options. Because each
SCOPE The PRP Alliance (PRPA) is a nonprofit 501(c)(3) tax-exempt organization devoted to assisting individuals diagnosed with the pityriasis rubra pilaris (PRP) and their caregivers. PRPA provides information and education to both the lay and the professional communities, advocates on behalf of its members in the political and healthcare arenas, and serves as a “bridge”
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… 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,
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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 »