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Do you know what Rare Disease Day is?
What do you think Rare Disease Day is? Do you plan on participating? How can recognition days like this make a difference?
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4 Replies
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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!
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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?
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Dagmar,
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?
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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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