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

  • Dagmar

    Member
    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: https://alsnewstoday.com/columns/landscape-als-patients-has-changed-over-years/

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

  • Dagmar

    Member
    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?

Log in to reply.