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    • #16011
      Kathleen Sheffer
      Participant

      rare disease dayHappy Rare Disease Day! February 28, 2019 is the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organizations from countries and regions all over the world hold awareness-raising activities.

      What are you doing for Rare Disease Day? What does this day mean to you?

      Share in the comments, and click the photo at the top to follow us on Instagram! @brittany-foster and I plan to revitalize the account this year to help raise awareness. You won’t want to miss our posts!

       

    • #16017
      Brittany Foster
      Keymaster

      I spread awareness about rate disease today and my eyes were seriously opened to how little research there can be for certain conditions. As you know, I met with the surgeon today and he is taking on the surgery and going to correct my aorta! It’s a huge surgery and one that doesn’t have a lot of studies on it because of how rare it is. The only thing to help would be a surgery. To see it on the computer screen and to have an explanation and drawing of my condition was just eye opening . It made me realize the awareness that is needed for it because I was BORN with this and am now just getting surgery on it after it took years of suffering. I hope to add this to the list of things I would love to speak about in hopes of helping others !

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