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What IS Rare Disease Day and Why is it Important to Me?
If you’re thinking that Rare Disease Day is just another ho-hum awareness event – – think again. It’s celebrated worldwide, and helps to shine a light on all rare diseases, including ALS.
In this week’s column, Living Well on the Rare Side, I share a brief history of Rare Disease Day and what it means to me.
This event is an example of rare disease communities banding together for a common cause. Do you feel this strategy is beneficial for gaining awareness, support and more medical treatments? Or do you think each disease community is better off fighting on their own?
#whatmakesmerareALS
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2 Replies
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A quote from today’s column by Rick Jobus, Facing the Rarefied Air of ALS with Dignity – –
(pALS) “… exemplify a “one for all, all for one” esprit de corps. They don’t allow ALS to define them, they define it. They are a rare bunch, indeed.”
This is an inspiring column! Thank you Rick!
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And don’t miss Kristen Neva’s excellent column:
ALS is Rare, but my Husband is Part of a Broader Rarer Community
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