. 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
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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
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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
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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
Thank you for updating… Read More »