Celebrate Rare Disease Day

Believe me, I know it sounds odd. Seriously, the Rare Disease people need to get a PR person to spin this in a better way. That said, I was recently contacted by the California Department of Public Health Infant Botulism Treatment and Prevention Program announcing February 28 as Rare Disease Day.

As most of you know, Hadley was one of 72 infants per year in this country to contract infant botulism at the age of 4 months. Without the work of these people, we could potentially have been in the hospital for over a month. But with their funding and their fairly newish drug Baby Big, our baby girl has grown up to be a strong and smart as crap toddler. Oh, and did I mention cute too?

From the Rare Disease Website:

On this day, millions of people around the world will observe Rare Disease Day. NORD is the U.S. coordinator, working in partnership with EURORDIS in Europe and other organizations around the world. More than 200 organizations, societies, and companies have signed on to support this effort as Rare Disease Day Partners. We applaud and appreciate what they are doing to focus attention on rare diseases as a public health issue.