The Long Sprint - a Column by Laura King Edwards

fight Laura cofounded Taylor’s Tale, one of the leading forces in the fight against Batten disease. Her sister, Taylor, was diagnosed with CLN1 disease at age 7; Laura writes “The Long Sprint” to inform and inspire anyone affected by rare disease. She is a professional content writer and published author — her memoir, “Run to the Light,” hit shelves in 2018. She is also a TEDx speaker and prolific runner. Laura earned an English degree from the University of North Carolina at Chapel Hill. A native of Charlotte, she lives with her husband and son in Fort Mill, South Carolina.
May 29, 2019 Columns by Laura King Edwards

My Road to Big Victories for CLN1 Disease

With 350 million patients, rare diseases represent the largest disease community on the planet. In fact, if all rare disease patients lived in the same country, they would represent the world’s third-largest country, behind only China and India. Of course, with so many included conditions (more than 7,000 and counting),…

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