PRP Alliance

PRP Alliance

PRP Dermatology Referral Initiative

Objective
To conduct an outreach effort to dermatologists, dermatology physician assistants, and dermatology nurses.j

Problem to be addressed
When a patient is diagnosed with PRP, the dermatologist — with rare exceptions — does not refer the patient to the PRP Alliance, PRP Facebook Support Group, the PRP Community on RareConnect or to the PRP Survival Guide. The PRP patient is typically referred to Dr. Google, Dr. Yahoo or Dr. Bing.

Scope
The target audience for the Dermatology Awareness Initiative includes “leaders” at teaching hospitals in the U.S. with a dermatology department, e.g., Department Chair. We will also reach out to leadership in the following:

 American Academy of Dermatology
 Society of Dermatology Physician Assistants
 Dermatology Nurses’ Association

Message
The PRP Dermatology Awareness Initiative will advocate that patients diagnosed with pityriasis rubra pilaris (IDC-10 L44.0) be referral to the PRP-specific information to be found at:

 Genetic and Rare Diseases Information Center (GARD)
 National Organization of Rare Disorders (NORD)

Methodology
The Dermatology Awareness Initiative is organized around the First Class mailing of a “PRP Packet” containing the following:

✽  Cover letter
 PRP Referral Protocol
✽  GARD brochure
✽  NORD PRP Report (16 pages)
✽  PRP Resources Card

Based on available resources, recipients of the mailing will be contacted a second time after the conclusion of PRP Awareness Month.

Measuring Success
The execution of the first mailing is the first measurement of success. This has never been attempted by the PRP community. The fact that it happens will be a reason to celebrate. We will continue the advocacy of a “PRP Referral Protocol” during 2018 and measure success a second time on November 1, 2018.

PRP Dermatology Referral Initiative