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Rare Disease Day Momentum Comes From Decades of Advocacy

Since being diagnosed with Friedreich’s ataxia (FA) in 2007, the words “rare disease” have been commonplace in my vocabulary. Like many things, we often don’t pay attention to something until it specifically matters to us. I hadn’t given much thought about the topic of rare diseases until I learned about FA. I wonder about this principle when I think about emergency exits. Will I know how and where to find them when their existence matters…