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 [...]
Numbers Don’t Add Up – Only 347 New Drugs Approved By FDA For 30 Million Americans With Rare Disease in Past 25 Years?
When it comes to finding Rare Disease statistics, the same old statistics and facts keep popping up again and again. I realize data is difficult to gather on 7000 different rare diseases that afflict 30 million Americans but it’s frustrating that sports teams and Wall Street have more comprehensive statistics when millions of people across [...]