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    • #29096
      DeAnn R
      Keymaster

      In this video, I talk about Rare Disease Day. Yes, it’s a day to bring awareness, but it’s also a day to recognize your uniqueness. Just because you may appear different though, doesn’t mean you’re subhuman. As a white tiger is still a tiger, a person with a rare disease is still a person. What are your thoughts regarding Rare Disease Day?

    • #29153
      Alyssa Silva
      Keymaster

      Ha, I like that analogy a lot. I think Rare Disease Day is a great way to celebrate our genetic anomalies, but I question how much awareness it actually generates. Do those who haven’t been affected by a rare disease in some way even know this day exists? Considering I only learned about RDD a few years ago, my guess is likely no. So while it’s great for the RDD communities, I wonder how effective this day actually is in terms of, like I said, awareness and educating others on the impacts rare diseases have.

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