While millions of Americans tune in to watch Florida State and the University of Oregon play in the Rose Bowl Thursday, two families are using the high profile game to raise awareness for a rare disease, Fanconi anemia. Dave Frohnmayer is a former President of the University of Oregon, and he and his wife lost two daughters to the disease. Florida State coach Jimbo Fisher also has a son with Fanconi anemia. The Frohnmayers spoke to PBS NewHour’s Hari Sreenivasan about the disease and the unique fundraising opportunity. Watch that conversation tonight.
A disease in considered rare in the United States if it affects fewer than 200,000 Americans. The National Institutes of Health (NIH) says there are approximately 6,800 such diseases in the United States. When considered all together about 30 million Americans suffer from a rare disease.
Here are a few of those rare diseases and links to foundations supporting research and awareness.
Fanconi anemia is a rare genetic disorder that prevents DNA from repairing. Most Fanconi anemia patients develop cancer and experience bone marrow failure. The current life expectancy is 33 years old. The disease affects fewer than 1,000 Americans. There is currently no cure.