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  • What Makes you Rare – Join Us!

    Posted by Amanda on February 13, 2020 at 6:06 am

    At ALS News Today, we are celebrating Rare Disease Day, which is February 29. It is a day when we shout loud and proud to the world that we have forged uniquely powerful identities through the odysseys of our conditions. It’s the day we demand more awareness, more action, more compassion. Let’s flood the internet with our voices to make our strength known!

    So, you’re probably wondering, how? We’re thinking of a video montage.

    Your voice is powerful and carries ripples to not only our communities, but expands to general societies. With your voice, we want to create a video montage at the end of the month of all people from different rare disease communities, showing and telling us why you are rare. So, if you are comfortable, we are taking video submissions. (However, we will be posting written #WHATMAKESMERAREALS stories throughout the month of February.)⠀

    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 #WHATMAKESMERAREALS⠀
    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 ALS” 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 #WHATMAKESMERAREALS

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

    Amanda replied 4 years, 2 months ago 1 Member · 0 Replies
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