ALS News Today Forums Forums Boosting Our Voices Awareness and Advocacy Do you know what Rare Disease Day is?

  • Dagmar

    February 13, 2024 at 11:36 am

    Rare Disease Day may be a new event to newly diagnosed ALS patients. They might even ask, “Why should I care?” Well, I’ve learned it matters a lot for us – – we gain more visibility, advocacy, and funding. I wrote a short piece about this annual event here:

    Feb. 29th – – wear your purple, pink,, and green… or show your stripes… whatever,…just help celebrate the day!

  • Dagmar

    February 20, 2024 at 11:43 am

    I am amazed (although maybe not surprised) by how little promotion of Rare Disease Day I see on ALS social media. RDD is Feb. 29th. BTW
    I wonder if it just doesn’t have visibility yet, or ALS community doesn’t see the value, or people don’t understand what it is???

    What do you think of Rare Disease Day?

    • Amanda

      February 21, 2024 at 8:17 am


      I was noticing the same thing, and having some of the same questions. I know ALS is rare, and each case is rare too. Between sporadic ALS, all the different genetic mutations and variants of each, Bulbar onset, limb onset — Are we so rare that our community does not see the value in Rare Disease Day?

      Community members – what do you think?

      Newer members, did you know that Rare Disease Day existed before this post?

      • Dagmar

        February 22, 2024 at 11:16 am

        Maybe new ALS patients feel so overwhelmed with ALS information that they overlook what the Rare Disease advocacy is doing to help ALS. ??

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