The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences. Funded by the National Institutes of Health, GARD supports a variety of programs to serve the needs of patients who have any one of approximately 7,000 rare diseases known today. Their rare disease database includes information […]
Genetic and Rare Diseases (GARD) Inforation Center GARD, a program of the National Center for Advancing Translational Sciences, is funded by the National Institutes of Health. The office supports a variety of programs to serve the needs of patients who have any one of approximately 7,000 rare diseases known today. Their rare disease
There is no excerpt because this is a protected post.
Protected: To Launch Or Not To Launch … 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 just to reach the 100-member milestone. The following update covers
The Land of Chat — Progress Report: 01/01 to 05/32 2020 Read More »
Thank you for participating in our What Works survey. If you have any questions, please email [email protected].
 Editor’s Note: With “sincere apologies for the slow pace,†our current contact at UCLA (Nolan Mahoney) has provided a long-awaited update. Nolan reports that three articles are in the queue for publication in medical journals. In otherwords, the pots we are watching belong to publications over which we — and UCLA — have no
UCLA PRP Survey Update: May 10, 2020 Read More »
It’s time for me to resurrect the PRP newsletter. Twenty-four issues (an average of 24 pages per issue) were published between April, 2014 and October, 2015. It has taken me two and a half years to get myself to a point — mentally — where I can make another 24-issue commitment. The following webpage is an
A PRP Newsletter Reborn Read More »
There is no excerpt because this is a protected post.
Protected: All Roads Lead to Rome Read More »
Select LanguageAfrikaansAlbanianAmharicArabicArmenianAzerbaijaniBasqueBelarusianBengaliBosnianBulgarianCatalanCebuanoChichewaChinese (Simplified)Chinese (Traditional)CorsicanCroatianCzechDanishDutchEsperantoEstonianFilipinoFinnishFrenchFrisianGalicianGeorgianGermanGreekGujaratiHaitian CreoleHausaHawaiianHebrewHindiHmongHungarianIcelandicIgboIndonesianIrishItalianJapaneseJavaneseKannadaKazakhKhmerKinyarwandaKoreanKurdish (Kurmanji)KyrgyzLaoLatinLatvianLithuanianLuxembourgishMacedonianMalagasyMalayMalayalamMalteseMaoriMarathiMongolianMyanmar (Burmese)NepaliNorwegianOdia (Oriya)PashtoPersianPolishPortuguesePunjabiRomanianRussianSamoanScots GaelicSerbianSesothoShonaSindhiSinhalaSlovakSlovenianSomaliSpanishSundaneseSwahiliSwedishTajikTamilTatarTeluguThaiTurkishTurkmenUkrainianUrduUyghurUzbekVietnameseWelshXhosaYiddishYorubaZulu Powered by Translate Editor’s Note: This section of the COVID-19 PRP Clearinghouse will include more random and personal comments about COVID-19, a road hazard that impacts the entire PRP global community. POSTED BY BILL M, PLANO, TEXAS (MARCH 18, 2020) I was just tested for COVID-19.
There is no excerpt because this is a protected post.
Protected: Heard out and about in the Land of Chat Read More »