WELCOME TO THE MSU FAMILY!

MSU is a patient-centered, volunteer nonprofit organization that leads with love, compassion and a unique understanding of the burdens Myositis brings to patients, care partners and families.  In this website you will find all the resources you need to help you navigate the burden this disease places on you and your loved ones:

SUPPORT

because healing isn’t just physical, it’s emotional. It’s finding people who understand and can say, “Me too. You’re not alone.” 

EDUCATION

because you  deserve to understand your disease as well as your doctors do.

FINANCIAL ASSISTANCE

because MSU wants to help restore what myositis tries to take from you –  security, dignity, and hope. 

ADVOCACY

because you are not your disease and your voice matters

‘RIGHT NOW’ RESEARCH

because who knows what you need to improve your life better than you?

 

In 2026 we  honor  The Power of Community and the impact MSU volunteers, advocates and patient researchers  are  having on  the lives of those affected by myositis. Come join us!  Become a part of our family and volunteer here. Consider  donating here.


From Emily Filmore, a founding director of MSU and Board Member Emeritus:  “MSU Has my permission to use the image of my MSU logo-inspired painting with credit to me, without restraint. This includes but is not limited to website, promotional items, and sales.”

SATURDAY, AUGUST 29, 2026

11 AM ET -4:30 PM ET

Join MSU in this free community gathering to talk about the issues that mean most to patients and caregivers.  Led by patients, the Summit will provide you with the information and tools needed to help you navigate your journey  with confidence and hope.

COMING SOON!

Research Starts with YOU

At MSU, we believe patients are the true experts in their disease journey. That’s why we’ve created a place where patients, care partners, advocates, clinicians, and researchers can connect around research that matters most to the myositis community:

🔹 Research updates & clinical trial information

🔹 Educational resources & patient tools

🔹 Expert and patient insights

🔹 Opportunities to participate in research Because research shouldn’t only focus on tomorrow’s cures—it should help improve lives right now.

Patient Financial Assistance

Living with myositis is hard enough. We are here to help with our Myositis Patient Financial Assistance Program. We cover certain emergency household expenses, medical bills, and mobility and assistive devices. The program is available to U.S. residents. See full details available in our help guide.

Get Support

At MSU, we are patients and caregivers, too. We started with support, and with our support programs, you will find a family. Join us for myositis patient and caregiver groups, Zoom support, and rooms on Clubhouse. You are NOT alone in this journey.

'Right Now' Research

MSU ‘Right Now’ Research has moved to the Myositis Patient Led Research Hub. Check out how our innovative model is transforming patient insight into actionable research and clinical impact!

Myositis Video Library

Watch recordings of our expert-led myositis educational videos to learn more about the various types of myositis and other myositis-related topics and patient opportunities. New videos just added!

MSU's Pain Paper

The MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies” has been published in the prestigious journal, Rheumatology and MSU is proud to make the paper available to everyone at no cost. Share with your doctors. Myositis Pain is Real!

Upcoming Myositis Support & Events

Are you living with myositis?

Patient Opportunities

There are many empowering opportunities for myositis patients. Get involved, advocate and educate, and be a part of traditional and unique patient-focused medical research, and more!

Volunteer at MSU

Tell your story – get involved in StateRare Disease Advocacy

Join support groups

Support MSU events

Donate blood and plasma for medical research

Donate to MSU

MSU Sponsors

© 2026 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

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