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 hashtag#RareDiseaseWeek. The Myositis Association is showing our stripes with advocates – myositis patients, care partners, and clinicians – from seven (!) states here in Washington…
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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 as you expect that you won’t be able to work for at least 12 months you can file an application for Social Security disability benefits….
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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 for Patients Act (S.B. 72). This proposed legislation, sponsored by Georgia Senator Matt Brass, will allow patients who have severely debilitating or life-threatening illnesses to…
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Two important changes have been made to Medicare Part D in 2025 that may help make the cost of your prescription drugs more affordable and more manageable.
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TMA was honored to partner with Myositis Support and Understanding (MSU) to host the Externally Led Patient Focused Drug Development (PFDD) meeting for adult dermatomyositis (DM) on June 7. View the replay of this important day online. Through the PFDD, we captured DM patients’ experience, perspectives, and needs. The program was designed to inform the…
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