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The full-time job of living rare

When the NIH and FDA canceled their Rare Disease Day celebration in Bethesda on February 28, TMA, in partnership with Nori’s Fight and Myositis International Health and Research Collaborative Alliance…

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My medical binder

By Dorothy Vetrano In January, Shawna Nielsen posted about her “Top 10 Tips for the Newly Diagnosed.” One of her tips was to create a medical binder. I’ve done this,…

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Unshakable optimism

By Mike Matthews At the end of 2021, Cambridge Dictionary announced their Word of the Year was “perseverance.” On top of all the profound collective challenges that everyone is currently…

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Ten tips for living with IBM

By Mike Bradbury Having lived with IBM for more than 20 years, I have a few suggestions for making the journey easier. [Editor’s note: Most of these tips are good…

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