Organisation

Myositis Support and Understanding Association, Inc.
City :
worldwide, online, Milford, Lincoln
Phone :
+18886967273
Contact
Event organised
United States

Myositis Support and Understanding Association, Inc. City: worldwide, online, Milford, Lincoln Phone : +18886967273

Myositis Support and Understanding Association (MSU) is an all-volunteer, patient-centered 501(c)(3) nonprofit organization founded by Myositis patients, for Myositis patients, and care partners. We cover the rare diseases included in the inflammatory myopathies: dermatomyositis, polymyositis, inclusion body myositis, necrotizing autoimmune myopathy, and the juvenile forms of poly- and dermatomyositis. 

Our current programs and services include financial assistance, education, support, advocacy, and video support, educational and activity live, online sessions. We try to provide each member with a personal experience while building lasting relationships, as it can be lonely living with a rare disease. We also host three closed Facebook support groups for the inflammatory myopathies including one group just for care partners, family members and friends. These groups are supportive emotionally and are educational, as we learn so much from the shared experience of others. 

Our Financial Assistance program covers household expenses, medical bills, and travel expenses for myositis patients to see a specialist who may provide them with more information and treatment options that other, local doctors may not know about. 

Also, we advocate for our members and Myositis patients with all levels of policy-makers, insurance companies, and other medical service decision-makers. Our vision also includes contributing any excess funds, if any, to Myositis cure- and treatment-centered research organizations to help further our shared goals.

We believe in a “Knowledge in Action” approach. MSU’s board consists of real patients with Myositis, so we are able to fully understand what other patients go through. Our knowledge of Myositis, among its various treatments, complications, hardships and struggles give us a powerful base from which to formulate action plans. We are a tight-knit group that supports each other and others in our community.


https://understandingmyositis.org
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