7-PRP Advocacy

. 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,

   .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

        . 1.  It begins with a question: How does PRP impact weight? 2.  Then comes a blank webpage in the PRP Survival Guide . 3.  Next is the TRANSLATE botton. Every webpage offers over 100 languages courtesy of Google Translate. . 4. Then we find posts on the subject of weight with feedback from PRP Facebookers. In

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

The Mountain Written by Laura Ding-Edwards , 2019 and submitted by Richard L — Lansdale, Pennsylvania and Christopher C — Ottawa, Ontario. If the mountain seems too big todaythen climb a hill insteadif the morning brings you sadness it’s ok to stay in bed ❖❖❖ If the day ahead weighs heavyand your plans feel like a

  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

You can help make more PRP history   The PRP global community made history earlier this year. The experiences of over 600 PRP patients have been harvested through a 12-question survey focused on the period from onset of PRP symptoms to the official diagnosis of pityriasis rubra pilaris.  The survey looks back on your own

Editor’s Note — The Aplastic Anemia & MDS International Foundation developed Standing Up for Your Health: Self Advocacy for Patients with Rare Diseases.a self-advocacy brochure that is worthy of note. It is unlikely that rank and file PRP patients and caregivers will go cover-to-cover and digest every jot and tittle. With that in mind, the following represents the equivalent of CLIFF NOTES