PRP Advocacy

What is the Rare Skin Disease Referral Initiative? Pityriasis rubra pilaris is one of 574 rare skin diseases. In fact, with a prevalence of only one in 400,000, there are only an estimated 808 patients under treatment in the U.S. When a patient is diagnosed with pityriasis rubra pilaris (PRP), the dermatologist – with very

Editor’s Note The following message was submitted as a comment to the American Airlines regarding the recently incident that resulted is a mother and her son, both diagnosed with a rare skin disorder (ichthyosis) and removed from a flight. SEE USA TODAY REFUSAL TO TRANSPORT According to the International General Rules (AA1) posted on your

    PATIENT DEMOGRAPHICS PRP Patient Profiles: 103 PRP Facebook Support Group: 72 Non-aligned: 31 Number of PRP patient profiles by state: Australia Capital Territory): 2 New South Wales): 27 Queensland: 24 South Australia: 2 Tasmania: 1 Victoria: 26 Western Australia): 8 Note Yet Shared: 13

From the Editor – The following sources were used in the preparation of Jan Tennant’s article PRP, Eyes and Impaired Vision. MedlinePlus, U.S. National Library of Medicine ❏» https://medlineplus.gov/ency/article/001017.htm National Institutes of Health ❏» https://nei.nih.gov/health/cornealdisease/ ❏» https://nei.nih.gov/health/dryeye/dryeye ❏» https://nei.nih.gov/health/blepharitis ❏» https://nei.nih.gov/kids/glossary ❏» https://nei.nih.gov/kids/about_the_eye ❏» https://nei.nih.gov/kids/your_eyes_natural_defenses AllAboutVision.com ❏» https://www.allaboutvision.com/conditions/eye-discharge.htm ❏» https://www.allaboutvision.com/eye-exam/expect.htm

Editor’s Note: A special thanks to Jan Tennant, Ringwood, New Jersey for her efforts to provide a PRP-oriented tutorial on eyes and impaired vision. In so doing she set a standard for similar tutorials in other areas, e.g., feet and impaired mobility, hands and impaired dexterity, etc. by Jan Tennant Patients diagnosed with pityriasis rubra

  TEXAS (1) Baylor College of Medicine Department of Dermatology Lee and Joe Jamail Specialty Care Center 1977 Butler Blvd., Suite E6.200, MS: BCM605 Houston, TX 77030-4101 ❏» Phone: (713) 798-6131 Fax: (713) 798-3252 Email: [email protected] Website: https://www.bcm.edu/departments/dermatology Leadership Dr. John E. Wolf, Jr., Professor and Chair Division Chief. Pediatric Dermatology Search (Clinic): Psoriasis: 32;

Editor’s Note: It will take a sustained effort over the next several months to complete a state-by-state, country-by-country overview of PRP-savvy dermatologists. The following represents one way to present the data provided by PRP patients regarding their dermatologists. In this iteration the feedback represents four PRP patients who live in New Jersey. You will note