Editor’s Note: This webpage focuses on the PRP Global Database as of January 31, 2020, the PRP-related data we capture, and why the data is important to every member of the PRP global community. Whether you are a patient, loving caregiver (spouse, partner, or parent), an extended family member, friend or a healthcare professional, the data we have amassed in […]
Database Update February 1, 2020 Read More »
The EveryLife Foundation has been leading a National Burden of Rare Disease Study with the goal of yielding a powerful tool for patients and organizations to use to advocate for the development of policy, therapies, and diagnostics aimed at reducing the burdens that rare diseases place on patients and their families. We are writing
National Burden of Rare Disease Studyf Read More »
The following INDEX provides a quick scroll of over 100 words, terms and jargon currently included in the PRP Patient-Friendly Glossary of Word, Terms & Jargon. You may return to actual PRP Glossary at any time. If you would like to suggest a word, term or jargon NOT currently in the PRP Glossary, please “Leave a Reply” at the end
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 seen at the
UPDATE Sauna Suit Feedback Read More »
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 gives us
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 researcher nor the participant knows
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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 Note — The PRP Patient-Friendly Glossary of Words, Terms and Jargon represents a journey of sorts — my journey within the global PRP community. Along the
PRP Patient-Friendly Glossary of Words, Terms & Jargon Read More »
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 access to basic analytics regarding
Land Of Chat — Year End Report Read More »