Meet the advocacy organizations supporting people with myositis

Help is what they’re all about

Patient advocacy organizations may help to provide support. These groups are often created by people living with similar conditions—bringing community members together to build connection and awareness. 

These associations help to amplify patient voices, fund important research, and drive education and policy efforts that are designed to make people living with all subtypes of myositis feel seen, heard, and supported. If you or someone you know has been diagnosed with myositis, advocacy groups can be an excellent source of reliable information and peer support.

The Myositis Association

The Myositis Association

The Myositis Association (TMA) is an international nonprofit organization focused on improving the lives of people affected by myositis. Founded in 1993, by patient Betty Curry, the organization has expanded to provide support, education, awareness, and advocacy for people living with all subtypes of myositis and their caregivers.

TMA promotes awareness of myositis within the medical community, fosters connections among patients and families around the world, and funds research aiming to improve the understanding and treatment of myositis.

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Myositis Support and Understanding

Myositis Support and Understanding

Myositis Support and Understanding (MSU) began as an online Facebook group in 2010 and became an all-volunteer nonprofit organization in 2015 with a mission to improve lives and empower those living with myositis through education, support, awareness, advocacy, access to research, and financial assistance for those with medical or household needs.

MSU offers educational webinars and a range of support services for patients and caregivers. MSU’s Right Now Research conducts and funds patient-led research studies that can have an immediate impact on patients' lives.

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Muscular Dystrophy Association

Muscular Dystrophy Association

The Muscular Dystrophy Association (MDA) is the nation’s leading nonprofit organization supporting children and adults living with myositis and more than 300 other rare neuromuscular diseases.

Since 1950, MDA has helped drive progress in research, specialized care, advocacy, and community support for people living with neuromuscular disease. Founded by families personally affected by muscular dystrophy, MDA continues to connect people with trusted resources, expert care, and one another.

MDA’s nationwide network of Care Centers provides multidisciplinary care from clinicians experienced in neuromuscular disease, while programs and educational resources support people living with neuromuscular disease, caregivers, and families navigating complex medical journeys together.

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An illustration of 4 people with 2 of them raising their hands
“Don’t be afraid or ashamed to ask for help.”

Franco, living with inclusion body myositis

These patient advocacy organizations are here to help you make sense of a complicated diagnosis, connect with people who get it, and access resources that can make daily life a little easier.