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Patients and patient organizations play a pivotal role in myositis research. Those who live with the disease are, in fact, the experts on myositis, and increasingly they are actively involved in academic research, national and international myositis research organizations, industry-sponsored patient advisory councils, and government supported research initiatives. The value of this expert insight is…
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No one needs to tell someone with myositis that the disease brings with it a great many physical, mental, and financial challenges. The debilitating symptoms significantly affect one’s quality of life (QoL), yet the impact of these burdens has not been documented in the literature. Until now. Recently, a team of researchers, led by TMA…
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By Kim Murray RD, LDN Inflammation is your body’s natural way of protecting itself. If you scrape your knee, for example, the redness and swelling you see on the skin around the cut are signs that your immune system is working to heal the injury. But when low level inflammation doesn’t go away and becomes…
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Rare Disease Day Summit highlights myositis and the 7000 other rare diseases affecting one in ten Americans COLUMBIA, MD, UNITED STATES, February 27, 2025 /EINPresswire.com/ — The Myositis Association (TMA), in collaboration with the Myositis International Health and Research Collaborative Alliance (MIHRA) and Nori’s Fight, will host, We Care for Rare Summit: Celebrating Myositis Science…
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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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