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  • Rare Disease Day 2022

    Posted by Danielle "Dani" Liptak on February 28, 2022 at 4:02 pm

    How do you participate in rare disease days? Does it feel like you’re still in a pandemic and bringing awareness to health issues seems uncomfortable or inappropriate at the time?

    I post about what it feels like to be rare or just some valuable hashtags that people can click on and find more information on my social media. I am most appreciative when my family and friends repost information about my rare disease.

    My posts included information on Facioscapulohumeral muscular dystrophy (FSHD). I explained that it is a rare familial disease with an estimated prevalence from 1/8,000 to 1/20,000. It is the third most common form of hereditary myopathy.

    I also added the definition of RARE from the online dictionary in hopes of sparking thoughts and images in followers’ minds.

    /rer/ adjective (of an event, situation, or condition) not occurring very often.

    “A rare genetic disorder.”

    Similar: unusual, uncommon, unfamiliar, out of the ordinary, atypical, singular, remarkable, extraordinary, precious, exceptional, outstanding.

    How does share being rare?

    Danielle "Dani" Liptak replied 2 years, 4 months ago 1 Member · 0 Replies
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