WHY DO WE NEED YOUR PROFILE? As patient advocates an ultra-rare skin disease, the PRP community — individually and collectively —cannot depend on healthcare professionals, pharmaceutical companies and other third parties to organize us. It is our responsibility! The PRP community is uniquely positioned to gather the “core data” that teaching hospitals need to recruit […]
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There is no excerpt because this is a protected post.
Protected: Lining Up Our Ducks Read More »
by Bill McCue, Founder & President, PRP Alliance, Inc. A little bit of history… When I was diagnosed with adult onset PRP on November 28, 2012, I immediately joined the PRPSupport Group and subscribed to their email-based forum. As a newcomer to that group, I was frustrated by the lack of response to the questions I posted.
PRP Community Database Update Grant Read More »
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
PRP — Greg Shalless Read More »
. Editor’s Note: Regardless of the worthiness of any cause, you have a right say “No”.It’s very easy to say “No” when a stranger knocks on your door. Whatever they’re selling, we’re not buying. Let’s face it — we’re all getting pretty darn good at saying “No”. In fact, for most of us, “No” has become
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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
Before You Opt Out Read More »
The PRP Alliance is working with RareConnect, an initiative of EURORDIS, the international equivalent of the National Organization of Rare Disorders. The PRP Alliance is a member of NORD and supports the PRP Community on RareConnect — a multi-language, non-Facebook option for adults with PRP and the parents of children diagnosed with juvenile onset. RareConnect
The PRP Community on RareConnect Read More »
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 »
The effort to update the PRP Community Database began on April 13, 2018 and has been returned to the front burner for PRP Awareness Month (November 2018). The objective was to confirm patient locations, email addresses, onset dates and onset ages, and the current status of PRP patients — young and old — worldwide. Thank
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The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. Currently, there are fewer than 400 approved treatments for 7000 rare diseases affecting more than 30 million Americans. The science exists for many of these diseases to be treated; however, treatments may
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