Myositis Support And Understanding Association

Description

Myositis Support and Understanding Association (MSU) is instrumental in improving the lives of people living with myositis (idiopathic inflammatory myopathies), a group of rare, complicated autoimmune muscle, skin, and often multi-organ diseases, through education, support, awareness, patient advocacy, access to research, and financial assistance.

MSU, founded by patients in 2015, is a fast-growing all-volunteer patient-led501(c)(3) nonprofit organization with the experience required to support and advocate for myositis patients and caregivers. Myositis affects the whole person and every aspect of their life. It’s rare, often disabling, and poorly understood by doctors. While research is ongoing, it is in a closed framework often missing the most important piece, the patient voice.

We advocate for the inclusion of the patient voice in research and clinical care, and we work to empower the community to acknowledge patients and caregivers as equals - a part of the team - in their healthcare management.

Technology is a driving force in our continued growth and success; educating, supporting, and connecting patients, caregivers, and family members with one another, and with doctors, researchers, clinical trials, partners, and patient-first focused providers.

The addition of our #MyositisLIFE program in 2019, with a dedicated interactive community-based website, provides a solution to a missing piece in awareness and research; the patient voice.