Do you want to live a rare life?

Then this newsletter is for you. Maybe you are part of the rare disease community, looking for ideas on coping and getting the most from life. Or perhaps you’re just someone who is tired of leading a mundane existence and is ready to live a focused, intentional life that impacts those around you.

Through original articles, curated resources and first-person stories from our community, you’ll get the tools, 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 more than one meaning,” 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 all 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 — and anyone hoping to live a rare life.


Stephen V. Smith
Ideas to help you learn, grow, create — for the rare disease community and anyone wanting to live life rare.