Is Your Disease on the RARE List™ – If So, More Bad News!

I wonder if people truly understand what it means if their rare disease or disorder is on the RARE List™? Last week, the Global Genes Project, leading patient advocacy organizations representing the rare disease community, issued the RARE List™, a stunning 65 page alphabetical listing of roughly 7,000 known rare diseases and disorders. Did you […]

Join Global Genes Project and Get Your Denim Ribbon To Support World Rare Disease Day 2010

World Rare Disease Day 2010 will be held on February 28.  Please join the Global Genes Project to help raise awareness for Rare Diseases of all types by wearing denim on Feb. 28 or holding an event in your local area to raise money for your favorite Rare Disease charity (my party will be to […]