Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
The RARE Project Announces Big Team Additions, Setting the Stage For Continued Success Thirty (30) million people in the US and 350 million people worldwide are affected by rare disease. Rare disease affects more children and their families then AIDS and CANCER combined worldwide. The [...]
The Global Genes Fund seeks online donations for conditions such as progeria, a rare disorder that causes accelerated aging. Those wanting to raise awareness about a rare disease will be able to take advantage of an initiative being launched later this year: a website that [...]
By Amy Dockser Marcus, Wall Street Journal Health Blog It’s a well-known maxim in science that curing a disease in a rodent doesn’t guarantee the same results in a human being. But new research on using the drug cyclodextrin in mice is likely to help [...]
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 [...]
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 [...]
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. – [...]
The Children’s Rare Disease Network and Global Genes Project had the opportunity to represent rare disease patient advocates at the California State Capital on Tuesday, March 24 at California Life Sciences Day 2009. The event was organized by our friends at the California HealthCare Institute [...]
