National Institues of Health Announces Cyclodextrin Clincial Trial For Fatal Cholesterol Disease Called Niemann Pick Type C
August 16, 2011 by Chris Hempel
Filed under Featured Stories
Over the past three years, many Niemann Pick Type C families as well as physicians treating NPC patients worldwide have contacted Dr. Caroline Hastings and I regarding Addi and Cassi’s treatments with hydroxypropyl-beta-cyclodextrin. Since sharing our intravenous (IV) and intrathecal (IT) cyclodextrin treatment protocols with NPC families and doctors in the U.S. and other countries, […]
National Center for Advancing Translational Sciences (NCATS) Announced By National Institutes of Health (NIH) Director Francis Collins
March 9, 2011 by Chris Hempel
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 […]