2019 Annual Patient Conference a success

TMA’s 2019 Annual Patient Conference was another amazing event! Each year the Conference provides those who live with myositis the opportunity to gather to learn about their disease as well as to meet and share experiences with others who understand their challenges. Nearly 500 people attended from all over the US as well as folks…

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Experts responded

Before the March meeting of the Global Conference on Myositis 2019 in Berlin, Germany, TMA asked its members to submit questions they would like to pose to the researchers and clinicians gathered at this meeting. You sent us nearly 80 questions, and we submitted them to the program organizers, seeking answers. A number of myositis…

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Update on Ig products in short supply

The FDA has issued a statement about the availability of immunoglobulin products, which many myositis patients depend upon for treatment of their disease. The statement says, in part: ” In the setting of the increased demand for Ig, other factors that ordinarily might not impact availability may have a greater effect. These could include uneven…

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My-PACER, a new research study, is recruiting

The Myositis Association (TMA) is partnering with the University of Pittsburgh for a new NIH-sponsored study entitled, “Myositis Patient Centered Tele-Research ( My-PACER ).” The investigators of this study (Drs. Rohit Aggarwal, Chester V. Oddis and Siamak Moghadam) have a long-standing interest in myositis. Dr. Aggarwal is also vice chair of TMA’s Medical Advisory Board….

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Ig products in short supply

Polymyositis, dermatomyositis, and necrotizing myopathy are diseases that are often treated with immunoglobulin (Ig) products, either intravenously (IV) or subcutaneously (SC). Many TMA members find IVIg or SCIg to be a very effective treatment. Recently, however, TMA has become aware of shortages of Ig products in some areas of the country. IVIg and SCIg are…

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