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Myositis Support and Understanding (MSU)

Myositis Support and Understanding (MSU), an all-volunteer 501(c)(3) nonprofit, focused on empowering and improving the lives of those fighting myositis, is the first nonprofit organization in the rare disease advocacy landscape to enroll in the Rare Advocacy Movement's "Our Lives Matter DEI Initiative, a Rare Black Lives Matter Too Collaborative.

Enrolling well above the minimum of five required participants, MSU has already completed the initial assessments of the patient advocacy organization track of the "Our Lives Matter" DEI unLearning program. Upon completion of the "Our Lives Matter" DEI unLearning program, MSU will be the first nonprofit patient advocacy organization to take authentic action to diversify its constituency and acquire the education and community-based understanding required to be effective allies to disenfranchised rare disease communities.


In addition to the active enrollment into the "Our Lives Matter" DEI unLearning program, the team at MSU has also enrolled UnderstandingMyositis.org into the "Our Lives Matter" Certification program. Upon completion of the certification program, UnderstandingMyositis.org will be eligible to receive the "Our Lives Matter" DEI Certified digital badge.

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The Rare Advocacy Movement (RAM) is a novel rare disease community-based advocacy network designed to address the issues that affect the real world people of the rare disease community.  RAM is the only community-based Center of Insight and Collaboration Zone offering rare disease stakeholders authentic, comprehensive real world insights, from the source. Each RAM member has made a public vow to always act in the best interest of the rare disease community by abiding by the Code of Conduct for Membership. Those who violate the Code of Conduct for Membership risk removal from the RAM membership and access to the global network via majority vote.