Protected: PRP Self-Advocacy — The Clinic Visit
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March 2019
Protected: Austin Galt Exchange
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Protected: RSDRI Diary
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2020 Rare Skin Disease Referral Initiative
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 rare …
*** PRP, Feet and Impaired Mobility
From the Editor The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we are best positioned to harvest that knowledge. ❏ FEET AND IMPAIRED MOBILITY (You are here!) ❏ FOOTWEAR & FOOT REMEDIES …
Jackson and Jordan — Could be one of us.
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 …
Australia —
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
References and Links — PRP, Eyes and Impaired Vision
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
PRP, Eyes & Impaired Vision
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 …