About Us - #MyositisLIFE

#MyositisLife by Myositis Support and Understanding

Myositis Support and Understanding (MSU)

Empowering the Myositis Community

Our Story

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 caregivers. MSU is the leading support network for myositis patients, their caregivers, family members, and friends.

Even though people living with the forms of the rare disease myositis are diverse and far-stretched across the globe, MSU provides various global communities and platforms for them to come together to share information on the effects, commonalities, and complexities of myositis to help empower each other. Through individual trial and error, similar experiences, and empathy for each other, MSU is continuing to build a supportive and informational network of camaraderie in which people can better understand their disease, effectively advocate for themselves, and realize they do not have to be alone in their struggles.

MSU is the leading support network for myositis patients, their caregivers, family members, and friends.

MSU, founded in 2015, is a fast-growing U.S. based myositis nonprofit that provides education, support, advocacy, awareness, clinical trial matching, access to research, and need-based financial assistance for patients. Partnering with like-minded organizations, and continuing to build relationships with researchers, MSU is helping to lead the effort to find effective, affordable, and safe therapies for all forms of myositis. Working together with the pharmaceutical industry in a straightforward and transparent approach is key to this endeavor.

Our Mission

Our mission is to improve the lives and empower those fighting Myositis through education, support, awareness, advocacy, and access to research.

We are a patient-centered organization that provides:

  • Independent, interactive online platforms that educate and connect patients, caregivers and family members with each other and with healthcare professionals.
  • Educational resources for patients, families and the healthcare community.
  • Need-based financial support for medical-related expenses.
  • Information-based advocacy with all levels of policy-makers, insurance companies and other medical services and their decision-makers.
  • Innovations in research and treatments through clinical trial matching and by contributing a portion of our donations when possible.

Our Vision

Our vision is to create a world where patients, caregivers, and providers have better knowledge, support, and understanding of Myositis.


More about MSU

Myositis Support and Understanding

Myositis Pain & Opioids Survey

Please take the anonymous survey whether or not you experience pain with myositis. Survey ends June 4, 2019. This initial data is needed to determine if a larger study is warranted.

Link to Survey

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