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A tribute to Marianne Moyer

Marianne passed away on May 2, 2024, from complications of SRP necrotizing myopathy and interstitial lung disease. On the eve of the one-year anniversary of her death, we offer this…

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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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