. IF YOU ANSWERED YES Whether you are the PRP patient, a caregiver/carer, or supporter of a PRP patient, thank you for sharing your willingness to COMPLETE the PRP Onset to Diagnosis Retrospective Survey. Since December 2020, I have processed nearly 700 surveys. Nearly 100 were either blank or have been previously submitted by PRP patients/caregivers. I will be emailing […]
There Once Was a Man Named Rose On March 2, 2021, Murray Rose (Surrey, British Columbia, Canada), unintentionally put my Muse in motion resulting in the world’s first — and perhaps last — PRP limerick contest. Thanks you to everyone who put pen to paper (or fingertips to keyboard. There once was a man named Rose,
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We are Not Alone Bill McCue x It was a Saturday morning in April 2016 when I realized that too many of my PRP friends in the Land of Chat were suffering too much pain, e.g., Ginny M, Deborah B, Jesper J, Bill F, and two now departed: Tierney R and Bab P, The house was empty and
. Every year I try to find a new way to celebrate Rare Disease Day My first Rare Disease Day commemoration was in February 2013. I was already six months into my own PRP journey and found myself inspired to register a domain name: prpAlliance.com and begin building the PRP Global Database. It would take me another nine months to
.Who are THEY? THEY are dermatologists THEY are the dermatology departments at teaching hospitals THEY are pharmaceutical companies THEY are the Federal Drug Administration THEY are legislators and policymakers THEY are the World Health Organization THEY are clinical psychologists and psychiatrists Who are WE? WE are the PRP global community WE speak with a
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It took five years to get here, but it was well worth the effort. In June 2015, I traveled to Vancouver, Canada to meet with the leaders of over 60 global dermatology patient organizations. We were there to discuss the creation of an international alliance. As a group we all lamented the same problem. On one
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Editor’s Note . A new member of the PRP Facebook Support Group posted a question. It was a spark that ignited a firestorm of response. First, the post, then the resulting chatter. Cynthia H — Tampa, Florida. Onset: October 2013 (59) “… I wonder how everyone deals with depression and sadness. Some days I feel so
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