PRISMS’ International SMS Conference

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The 10th International SMS Conference "Honoring the Past, Treasuring the Past, Shaping the Future" The event will be an opportunity for SMS patients and their families to share their experiences…

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Editor’s Choice: Rare Adolescence, Rare Parenting and Rare… CEOing

Happy Memorial Day Weekend Patient Worthians! This week we have an inspiring interview with the CEO and Founder of the Hereditary Neuropathy Foundation. We also have a motivating story on a cheerleader battling Friedreich's…

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Embracing the Beauty without Sugarcoating the Pain: Parenting a Child with SMS
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Embracing the Beauty without Sugarcoating the Pain: Parenting a Child with SMS

Who would think that missing a small amount of genetic information from one chromosome could alter someone’s life, and the life of their loved ones, so dramatically? For many parents,…

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