By Bill Connellan I’ve always believed that life has a sense of humor. I started my career as a newspaper reporter in Detroit, and before I was even 21, I…
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Beyond Positive or Negative
By Julio Huapaya, MD As a pulmonologist who takes care of patients with myositis, one of the most difficult challenges I face when discussing their illness, is how unpredictable their…
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Patients Make a Difference in Rare Disease Research
In 2015, almost ten years after Ingrid de Groot was diagnosed with dermatomyositis, she was invited to a European Neuromuscular Center workshop on “outcome measures and clinical trial readiness in…
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The Myositis Agenda on Rare Disease Day 2026
By Paula Eichenbrenner, TMA Executive Director Myositis advocates are gathered on Capitol Hill in Washington, DC to meet with Members of Congress about issues that are incredibly important to our…
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Celebrating Successes at Rare Disease Week 2026
TMA Board of Directors Chair Rich DeAugustinis is leading our delegation of myositis advocates at EveryLife Foundation’s Rare Disease Week, February 24-26, 2026 in Washington, DC. Rare Disease Week brings…
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