From an Initiative to a Registry

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From the Editor…
Let’s face it … dermatologists know more about psoriasis, atopic dermatitis, and other common skin disorders than they do about pityriasis rubra pilaris. Even more disconcerting is the fact that when a patient is diagnosed with PRP, dermatologists rarely make a referral to support resources, e.g., PRP Survival Guide, PRP Facebook Support Group, or the PRP Alliance. Instead, they refer us to Dr. Google and Dr. Yahoo.
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I’ve been beating my head against the proverbial wall on this subject since early 2013. It has taken me five years to be EXACTLY where we needed to be. That said, I still need your help — more than ever — to help spread the word about the Rare Skin Disease Referral Initiative.
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PRP is one of 597 rare skin diseases found in a patient-friendly database maintained by the Genetic and Rare Diseases (GARD) Information Center. GARD is a federally-funded program of the National Institutes of Health. For example, reliable information about PRP symptoms, diagnosis, treatment, and patient-support resources are maintained in the GARD database. Link to GARD
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One year ago I shared my idea of a Rare Skin Disease Referral Initiative with the folks at GARD. I told them it was my intention to advocate a protocol that EVERY dermatologist treating a patient with a rare skin disease should refer that patient to the GARD homepage. While dermatologists might be ambivalent to one ultra-rare skin disease like PRP, they could not ignore the collective needs of a substantially larger patient population diagnosed with one of 597 rare skin diseases. A referral to GARD is an effortless way for dermatologists worldwide to better serve their patients.
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The September issue of THE DERMATOLOGIST, a monthly magazine read by more 20,000 dermatologists, includes “Rare Skin Disease Patients Need A Roadmap”, an article I wrote in support of the Rare Skin Disease Referral Initiative. 
With the article available in print and online, we are now in a position to effectively execute an outreach campaign over the next 10 weeks. Link to article
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There are two ways to support the Rare Skin Disease Referral Initiative as a PRP patient or caregiver:
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First, tell your dermatologist about the article and provide the link. Call and/or email. Don’t wait for your next appointment.

Second, add your dermatologist to the PRP Registry of PRP-Savvy Dermatologists. The registry will be added to the PRP Survival Guide on November 1, 2018 as part of PRP Awareness Month. Imagine a newly diagnosed PRP patient looking for a dermatologist who has treated PRP before. Or, imagine a PRP patient/caregiver seeking a second opinion. We need to build this registry and your dermatologist’s name and contact information is how it all starts.  Add your derm

And a final plea for your help…

A sustained outreach effort will involve press releases, coordination with GARD and the National Organization of Rare Disorders, and mailings to teaching hospitals and major dermatology clinics. Your donation will help cover printing, postage, and related expenses.