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    • #14613
      Jenny Livingston
      Keymaster

      Rare Disease Day is celebrated on the last day of February with the intent to raise awareness about rare diseases and their impact on patients’ lives. In the spirit of Rare Disease Day, community members are sharing videos of what makes them rare. Check out these videos for inspiration, then (if you’re comfortable) submit your own!

      Luisa: https://www.instagram.com/p/B8kJB6HAcye/?utm_source=ig_web_copy_link

      Brad: https://www.instagram.com/p/B8r_-L6A8jV/?utm_source=ig_web_copy_link

      Dharma: https://www.instagram.com/p/B8t9hzqA4Au/?utm_source=ig_web_copy_link

      Instructions for submissions:

      1. For videos:
      Get your selfie cam out and tell us who you are, where you are from, and most importantly what makes YOU are rare. Post on your IG, and tag us in the video! Don’t forget to share it using the hashtag #WHATMAKESMERARECF⠀
      Note: we will be creating a video with all the participants. If you want to be be part of this initiative email us your video to [email protected] and be sure to use “What Makes Me Rare CF” in the subject line.

      2. For written submissions:
      Written submissions: tell us who you are, where you are from, what your rare disease is, but most importantly why YOU are rare. And, send us a photo of yourself — we’ll be sharing throughout the month of Feb! When you post on your IG, tag us in and don’t forget to share it using the hashtag #WHATMAKESMERARECF

      Email all submissions to [email protected] and be sure to use “What Makes Me Rare CF” in the subject line.

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