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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How to qualify for Social Security Disability benefits with a rare disease
If you have been diagnosed with a rare disease and you can’t work because of the symptoms of that disease you may qualify for Social Security disability benefits. As long…
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TMA board vice chair testifies in support of Georgia’s Hope for Patients Act
On Monday, February 10, 2025, Rich DeAugustinis, Vice Chair of TMA’s Board of Directors, testified to the Georgia Senate Committee on Health and Human Services in support of the Georgia Hope…
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