Blog Hop for Rare Disease Day – Please Read, Share and Raise Awareness!


There are less than 30 days to World Rare Disease Day on February 29. We kick off our campaign this year as host of a Rare Disease Blog Hop. Over 40 bloggers united to blog today to raise awareness about this important day and on […]

Washington Post Supplement sheds light and insights into the world of rare disease


Many Advocates, Industry, Parents, Advocacy Organizations have participated in the first in a series of Rare Disease reports being produced by Media Planet. This first report will be seen by over 4 million readers of the Washington Post, available on newsstands around the country today. […]

PARENT DRIVEN RESEARCH – Innovations from the trenches!

A Push to spur more drugs for deadly rare diseases LAURAN NEERGAARD, AP Medical Writer Cassidy Hempel, 6, waves at hospital staff with the help of her mother Chris at the Children’s Hospital and Research Center in Oakland, Calif., Friday, March 18, 2011. Cassidy and […]

Kids Helping Kids – Denim Ribbon’s being made to support World Rare Disease Day!


Over 50 kids and their families descended upon the RARE Offices to help make denim ribbons in preparation for World Rare Disease Day taking place this February 28, 2011!  It was inspiring to see so many kids, that I am sure would have rather been […]

Children’s Hospital Oakland Receives FDA Clearance to Begin World’s First Cyclodextrin Administration Into the Brains of Twins with Rare and Deadly Cholesterol Disease

Sugar Molecule Used in Common Food and Household Products Like Febreze® Fabric Refresher Called Hydroxypropyl Beta Cyclodextrin (HPßCD) Will be Delivered into Twins’ Central Nervous System in an Attempt to Stop Neurological Progression of Niemann Pick Type C Disease September 23, 2010 Oakland, Calif. – […]