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An IBM patient-led research project Editor’s note: This is part one of a three-part series of articles from Dr. Kevin Austin, an Adjunct Professor in the Health Futures Institute’s Personalised Medicine Centre in Murdoch University, Australia. He lives with IBM and turned his research skills toward a study to understand the priorities of those living…
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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 tribute in recognition of her dedication to TMA and those who lived with these rare diseases. It’s not often that one meets a person who…
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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 (MIHRA), brought the myositis community together virtually to share the latest in myositis research and hear those who live with these diseases tell the stories…
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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, and I highly recommend it. It has become a lifesaving tool for me. Upon hearing the news of my dermatomyositis diagnosis back in 2020, I…
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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 experiencing, the myositis community has the added personal crucible of managing a chronic disease for which there is no cure. Despite the best efforts of…
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