Saturday, September 21, 2019

National Center for Advancing Translational Sciences (NCATS) Announced By National Institutes of Health (NIH) Director Francis Collins

March 9, 2011 by  
Filed under Featured Stories

The Global Genes Project, a rare disease patient advocacy organization, was invited to present a giant handmade denim genes ribbon to Dr. Francis Collins on February 28 — Rare Disease Day 2011. This year the NIH Office of Rare Disease Research (ORDR) encouraged everyone to wear jeans to show support for the campaign of using [...]

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National Institutes Of Health to Host Rare Disease Day Event; Dr. Francis Collins To Speak; Wear Jeans!

January 9, 2011 by  
Filed under Featured Stories

The National Institutes of Health (NIH) will celebrate the 4rd Rare Disease Day on February 28, 2011, with a day-long celebration and recognition of the various rare diseases research activities.  The event will be held in the Lipsett Amphitheater from 8:30am to 5:15pm. Dr. Francis Collins is expected to speak. A tentative agenda has been [...]

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Cyclodextrin As A Therapeutic “Drug” For HIV AIDS, Niemann Pick Type C and other Viruses

April 16, 2009 by  
Filed under News

Addi and Cassi’s first round of cyclodextrin infusions have been going smoothly at Renown Regional Medical Center in Reno, Nevada.   We’re now into our third day of continuous infusions of hydroxy propel beta cyclodextrin (HPBCD) into the girls’ bloodstreams and they don’t seem to be experiencing any negative side effects.    I feel as if it’s [...]

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