Live Life Rare

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Our Neighbor Knew How to Live Life Rare
When asked what I mean by living a rare life, there's no better example than Ralph Dawson
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Stephen V. Smith
2
Is family the best ICU medicine?
How the presence of family helped me fight ICU delirium and forge a stronger recovery
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Stephen V. Smith
1
When ICU Does More Harm Than Good
Leaving ICU is a sign that a patient has survived. But what comes next doesn't always look like survival.
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Stephen V. Smith
2
July 2023
Why I Write About Rare Disease
Chronicling my rare disease journey is not only for me
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Stephen V. Smith
2
May 2023
Get Your Toolkit Ready for the Next Challenge
What helps you cope when adversity comes your way?
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Stephen V. Smith
1
When You Grow Up
Rare disease changes your story, but you have the power to direct the rewrite
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Stephen V. Smith
You Need a Project Management Degree
Managing rare disease requires skill and patience
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Stephen V. Smith
1
April 2023
Good Grief
What role does grief play in living with a rare disease?
 • 
Stephen V. Smith
5
Too Tired to Swing
When there's not enough fight to get off the mat
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Stephen V. Smith
April 2021
There's Always Something Around The Corner
How do you prepare when you don't know what you don't know?
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Stephen V. Smith
March 2021
Life Inside The Margins
Can we teach ourselves to sacrifice the good in order to experience the great?
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Stephen V. Smith
Growing A Rare Community
We have much to learn from one another as we live a rare life
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Stephen V. Smith
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