Live Life Rare

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Rethinking the Wind
“And the wind that blows the candles out, well it also fans the flame”
 • 
Stephen V. Smith
2
A Great Start to a Big Rare Week
I began this week hiking to a marvel of nature. I’ll end this week on the surgeon’s table.
 • 
Stephen V. Smith
2
My Interview With Wes Michael of Rare Patient Voice
The group connects patients and caregivers with the opportunity to voice their opinions and contribute to the rare disease community — and beyond
 • 
Stephen V. Smith

November 2023

Your Story Is Not Just Yours
There’s a greater community waiting to learn from what you’ve been through
 • 
Stephen V. Smith
1
Now You Can Listen
The Live Life Rare podcast brings you insight in audio format
 • 
Stephen V. Smith
2

October 2023

Learning, Walking, and Teaching
Three key roles we need to live a rare life
 • 
Stephen V. Smith
1
Presence Over Presents
Focused attention is the best birthday gift of all
 • 
Stephen V. Smith

August 2023

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
 • 
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
 • 
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.
 • 
Stephen V. Smith
2

July 2023

Why I Write About Rare Disease
Chronicling my rare disease journey is not only for me
 • 
Stephen V. Smith
2

May 2023

Get Your Toolkit Ready for the Next Challenge
What helps you cope when adversity comes your way?
 • 
Stephen V. Smith
1
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