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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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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…
