06.01.05 Finding “Active” PRP Patients
by Bill McCue,
PRP Patient Advocate
Nicola Galt and I attended the Coalition of Skin Diseases Annual Luncheon at the Marriott Marquis in San Francisco on Saturday, March 21, 2015. Dr.Mark Lebwohl, incoming president of the American Academy of Dermatology, spoke briefly and pledged to have an open door for patient support groups. His comment took me by surprise. Since May, 2013, I had been trying, quite unsuccessfully, to penetrate the AAD “non-member” shell. I was inspired to take action.
✴PRPA incorporated as a nonprofit in Texas
✴IRS grants PRPA 501(c)(3) tax-exempt status
✴PRPA joins Coalition of Skin Diseases (CSD)
✴I made an 18-month commitment to two AAD workgroups: Patient Reported Outcome Measures and Inflammatory Skin Disease/Itch Measures
✴PRPA joins the National Organization of Rare Disorders (NORD) and
✴PRPA participates in the American Academy of Dermatology Association’s Legislative Conference.
If Dr. Lebwohl hadn’t made his “open door” comment in San Francisco, I might still be just thinking about incorporating as a nonprofit corporation in Texas.
But, he did.
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For those new to the world of PRP, Pityriasis rubra pilaris is an über rare skin disease. With an oft-quoted prevalence rate of one in 400,000.
The search for “active” PRPers began in ernest on November 6, 2013. The 2014 PRP Worldwide Census sought to identify PRP patients who were either “active” or “in remission.” It was our hope that identifying the dermatologists who diagnosed and/or treated the PRP patient might eventually lead me to other PRPers who were patients of the PRP savvy.
We also made an attempt to reach out to 92 state, regional and local “societies” that fall under the AAD umbrella. That was a major disappointment. Perhaps PRP was simply too rare to spark any response.
To date, we have been able to identify 1,622 patients with PRP. Sadly, only 292 (18%) are classified as “active” Data has been acquired from the following sources:
✴2014 PRP Worldwide Census
✴Email-by-email harvesting of data from 30,000 documents in the PRP (email) Support Group archive
✴The gathering of data from over 20,000 posts and comments in the PRP Facebook Support
✴2015 Core Data Census
Published in On the Road…October 2015