Tag: rare disorders

A total of 162 posts are filed under rare disorders
The Global Genes Project – Look Where We Have Come!
In January 2010, a collaborative project ensued called the Global Genes Project. The mission – to build a platform that would create… Continue Reading
The Global Genes Fund – To Help Bring New Money, Interest and Champions to the Rare Disease Community
Their exists an inherent need to bring more money into the rare disease community to fund research.  Individual rare disease specific… Continue Reading
Children's Rare Disease Network Partners With Medpedia.com To Create Rarespace
Online Knowledge Share Platform to Provide Valuable Information to Rare Disease Community Dana Point, Calif. (June 29, 2010) – Every… Continue Reading
FDA Hearing on Rare and Tropical (Neglected) Diseases
Just finished up watching the FDA hearing webcast from earlier this week. Loving Sen. Sam Brownback …. If you have a rare disease, “God… Continue Reading
Rare Disease Family in the Limelight! The TODAY Show – Tuesday June 22
Derek Seymour, an 11 year old boy with the rare disease Joubert’s Syndrome, will be on the NBC TODAY SHOW tomorrow morning JUNE 22ND. … Continue Reading
Prescription Drug User Fee Act (PDUFA)
The Prescription Drug User Fee Act (PDUFA) allows the FDA to collect fees from drug makers that produce specific human drug and biological… Continue Reading
Primary Care and HIT – What do they mean for you?
Howard Liebers of MarbleRoad asks questions about how efforts in both primary care and health information technology may impact families… Continue Reading