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  • Rare Disease Day, What is Rare?

    Posted by price-wooldridge on February 2, 2023 at 7:00 am

    February is Rare Disease Month, having the “rarest” number of days of any month in the year. Rare Disease Day this year is the last day of February, the 28th.

    Here’s a great article on Rare Disease Day from the National Institutes of Health, which explains it in more detail.
    So, what is Rare? Here are some observations from NORD president and CEO, Peter Saltonstall.

    For a disease to qualify as rare, it must affect fewer than 200,000 Americans or less than .06% of the U.S. population.

    The National Institutes of Health has identified more than 7,000 rare diseases, which all totaled, impact more than 25 million Americans.

    So how rare is Lambert-Eaton Myasthenic Syndrome?

    According to, they estimate 3,000 people in the U.S. may have LEMS.

    According to the Cleveland Clinic, it is estimated that 2.8 million people have LEMS, worldwide. If you do the math, this is 2.8 LEMS patients per 1 million population. Going further, if you divide the U.S. population (333,287,557) by 2.8 per million, there are estimated to be 993 LEMS patients in the U.S., or about 1,000.

    1,000 to 3,000 possible LEMS patients in the U.S. is FAR below the 200,000 counts needed to qualify as a rare disease. In fact, we are ultra-rare!

    I don’t know about you, but I’m feeling pretty rare!

    Because LEMS is so rare, have you noticed the lack of awareness in the medical community and with the public?

    price-wooldridge replied 1 year, 2 months ago 0 Member · 0 Replies
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