By Rich DeAugustinis, Chair, Board of Directors, The Myositis Association This week, 54 Members of Congress—Republicans and Democrats, from 26 states, in both the House of Representatives and the Senate—signed…
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TMA’s Call to Action to the Veterans Administration
TMA urges the adoption of improved processes for obtaining disability benefits from the Veterans Administration. These benefits are crucial as they entitle former service members to comprehensive healthcare, disability compensation,…
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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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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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Rare Disease Advocacy During Rare Disease Week 2025
By Paula Eichenbrenner, TMA Executive Director. “Strength in numbers” is a cliche because it’s true, and every year, EveryLife Foundation for Rare Diseases assembles nearly 1,000 rare disease advocates during…
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