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Advocacy for LEMS and You, Rare Disease Day
February 28th is National Rare Disease Day. It’s the day when we get to tell all our friends on social media about our Lambert-Eaton and the other 4,000 rare diseases out there.
First, let’s define “advocacy”. We need to know what it really means, right!
From Merriam-Webster:
ad·vo·ca·cy | \ ˈad-və-kə-sē \
Definition of advocacy: the act or process of supporting a cause or proposal: the act or process of advocating…something.History and Etymology for advocacy
Middle English advocacie “intercession,” borrowed from Anglo-French advocassie “pleading,” borrowed from Medieval Latin advocatia “patronage,” from Latin advocātus ADVOCATE.That’s a big, important word!
We all should advocate for ourselves of course, and we talk about being proactive when it comes to our diagnosis and treatment plan for LEMS. Being proactive is simply advocating for ourselves.
This topic today though, is about advocating on Rare Disease Day, February 28th. I hope you can find a time that day to advocate for LEMS in the rare disorder space. Let everyone know how ultra-rare it is. Tell them how we have no clinical trials currently in progress, that we have only one FDA-approved medication for the disorder. Let them know we need more research and how they can contribute to the effort. And if not for LEMS, then some other rare disorder they may know about or have a family member with it.
February 28th is Our day!
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3 Replies
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I thought I signed up for this or registered for it but I don’t see a link in my files.
Do you know what the link is to join this conversation?-
@searching4answers I’m not sure which link you are looking for? There was a BioNews Rare Disease Day event, but I’m just seeing your post 5 o’clock my time, and I’m sure that event is over. My apologies for any confusion.
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I had 1500 marked in my calendar so I thought that I had registered somewhere. Usually I get a link sent to my email but I couldn’t find anything for this. I also have HAE-another rare disease but I didn’t find a link in that file either….the computer fairies must have eaten it 🙂
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