7-PRP Advocacy

    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 […]

 The following INDEX provides a quick scroll of nearly 100 words, terms and jargon currently included in the PRP Glossary of Word, Terms & Jargon. You may return to actual PRP Glossary at any time.That said, the best way to benefit from the PRP Glossary is to start at “advocacy, self” and work your way

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

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

How the hell can you ask me, “How we feel?” Barry Gonen 1986©, Negbah, Hadarom, IsraelOnset: 1949 at the age of three. Do you want to be famous? unique? special ?A rare specimen of humanity? One in ten million? Do you want to be published in journals, reports and books?A subject of conversation and discussion? Do you

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

 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  Editor’s Note — I made a New Year’s Resolution on January 1, 2020. It took me 20 days to make the PRP Glossary of Words and Jargon a reality. The

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

#66 — The Christmas from Hell 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

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 with blue