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  • What is Rare Disease Day 2022?

    Posted by Amanda on February 11, 2022 at 7:05 am

    Are you new to the forums?  Have you heard of Rare Disease Day? Well, “Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives.”

    This year it is February 28th!  This is our chance to shine a light on ALS!! Remember all those posts that Richard made with examples of letters to send to your local and state politicians?  Now, for Rare Disease Day, and May, ALS Awareness Month are the best times to double down and send those letters, emails, tweets, social media posts (anything you can do) out again and again?  Together we can make a difference.  Take a look at some of the different Rare Disease Day websites for ideas on how you can get involved.  It does not have to be a huge undertaking, you can contribute from the comfort of your own home using your computer. Encourage your friends and family to rally too!!


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