Rare Disease Day 2012

The last day of February each year is designated as World Rare Disease Day. In the U.S., a rare disease is one that affects fewer than 200,000 people. There are nearly 7,000 rare diseases affecting nearly 30 million Americans, with 75% of those diseases affecting children. In other words, as many as ONE in TEN Americans are suffering from a rare disease. There is NO cure for ANY rare disease and there are only approved treatments for 5% of the rare diseases. Shocking, isn't it? Yet, we are still being ignored. When Gage was diagnosed with Wolman's Disease, there was no cure or proven treatment. We did the bone marrow transplant with the desperate hope that it would somehow work. And it did. But it also lead to his death. We HAVE to do better than this! There HAS to be a better way!