What does it mean to live a rare life?

A rare disease can impact every part of your life. How do you cope? What adjustments can you make? How do you get the most out of life when your life becomes so different?

Live Life Rare is a newsletter devoted to exploring what living a rare life can truly mean. Through original articles, curated resources, and first-person stories from our community, you’ll get inspiration, encouragement, and support to build something beautiful from the finite time we are given on this earth.

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About the author

Stephen V. Smith is an ICU survivor who lives with the rare disease myasthenia gravis. Following an award-winning career as a newspaper journalist, Stephen founded a small communications firm alongside his wife in 1996. Taking that company from a spare bedroom to the Inc. 5000 list, the Smiths sold it to a strategic acquirer in the middle of a pandemic. “I believe that to live life rare has many meanings,” Stephen says. “It’s not just about the big wins ... it’s also about the small decisions we make every day to face our challenges, choose the better path, and look for the positive in tough situations.”

“The life we want to build, and the legacy we want to leave for those who follow us, depends on how we choose to live today. Let’s choose to live life rare!”
— Stephen V. Smith

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Stories and resources to support the rare disease community


Stephen V. Smith

Writing to support the rare disease community. Also helping SMB owners get ready to sell their businesses. Grew & sold a 7-figure business, & today coaches owners who want to exit in the next 5 years. Been living with myasthenia gravis since 2014.