Bill McCue

From the Editor… The issue of sauna suits resurfaced with an interesting exchange between PRP Facebookers. Makes one wonder: How many dermatologists would prescribe a sauna suit to a PRP patient? Would the cost of the sauna suit be covered by insurance. Worthy of a survey? Jan B – Forest Lake, MN I am being […]

PRP Awareness Month Begins Today Select LanguageAfrikaansAlbanianAmharicArabicArmenianAzerbaijaniBasqueBelarusianBengaliBosnianBulgarianCatalanCebuanoChichewaChinese (Simplified)Chinese (Traditional)CorsicanCroatianCzechDanishDutchEsperantoEstonianFilipinoFinnishFrenchFrisianGalicianGeorgianGermanGreekGujaratiHaitian CreoleHausaHawaiianHebrewHindiHmongHungarianIcelandicIgboIndonesianIrishItalianJapaneseJavaneseKannadaKazakhKhmerKoreanKurdish (Kurmanji)KyrgyzLaoLatinLatvianLithuanianLuxembourgishMacedonianMalagasyMalayMalayalamMalteseMaoriMarathiMongolianMyanmar (Burmese)NepaliNorwegianPashtoPersianPolishPortuguesePunjabiRomanianRussianSamoanScots GaelicSerbianSesothoShonaSindhiSinhalaSlovakSlovenianSomaliSpanishSundaneseSwahiliSwedishTajikTamilTeluguThaiTurkishUkrainianUrduUzbekVietnameseWelshXhosaYiddishYorubaZulu Powered by Translate November 1, 2017 Every patient organization needs an Awareness Day they can call their own. We celebrate Rare Disease Day on the last day of February and share the spotlight with 7,000 other rare diseases. However, PRP Awareness Month

An Open Label Pilot Trial of Guselkumab (Tremfya) in the Treatment of Adults With Pityriasis Rubra Pilaris (PRP)® Open label is a term used to describe the situation when both the researcher and the participant in a research study know the treatment the participant is receiving. Open-label is the opposite of double-blind when neither the

x “¢ A “¢ B “¢ C “¢ D “¢ E “¢ F “¢ G “¢ H “¢ I “¢ J “¢ K “¢ L “¢ M “¢ N “¢ O “¢ P “¢ Q “¢ R “¢ S “¢ T “¢ U“¢ V “¢ W“¢ X “¢ Y “¢ Z “¢ Top x Editor’s

From Bill McCue, Editor In 2008, Jonah Grant-Scarfe, a PRP sufferer from Canada, recognized the value of Facebook as a tool with which to share PRP-related insights and experiences with fellow PRP patients. The PRP Facebook Support Group didn’t immediately catch on. In fact, it took five years to reach the 100-member milestone. Facebook provides

Several years ago a member of the PRP Facebook Support Group posted that her PRP hubby would be spending his Christmas in a hospital. It made me think about Christmas 2012 – my first Christmas with PRP. ‘Twas the night before Christmas, I remember it well. There was no sign of “Merry” as I drew

by Karen Schilling Gould, Palo Alto, California Editor’s Note: Here are some new lyrics to Walking in a Winter Wonderland. Karen calls it “Walking ’round with Blue Gloves on my Hands.”   Ears are clogged, I’m not listening Hands and feet, they are stiffening A real scary sight My face feels so tight Walking ’round

Whether you are the PRP patient, a caregiver/carer, or designated surrogate, thank you for taking the time to update the “core data” associated with your PRP patient profile. If you have any questions, please email me. bill.mccue@prpAlliance.org    

Editor’s Note: The PRP Report is published by the National Organization of Rare Disorders on the NORD. A “Translation Version” using Google Translate functionality is provided here to accommodate PRP patients and their caregivers. Pityriasis Rubra Pilaris NORD gratefully acknowledges the following for their assistance in preparing this report: Mark Lebwolh, MD, Chairman, Dermatology Department,