Register to attend - Introduction to Ra Pharma & the Potential of Zilucoplan for the Treatment of IMNM

Register and join MSU along with Ra Pharma for a live webinar on Wednesday, November 6, 2019, at 7 PM Eastern time, “Introduction to Ra Pharma & the Potential of Zilucoplan for the Treatment of Immune-Mediated Necrotizing Myopathy (IMNM).”

Explore Myositis

Learn more about the different types of the idiopathic inflammatory myopathies (IIM), generally referred to as myositis, rare systemic autoimmune muscle diseases.

Myositis Programs

Learn more about patient-centered programs we offer including support, education,  financial assistance, clinical trial matching, advocacy and access to research.

Get Support

Learn about the various free support options we provide, including live video support sessions and online groups, and get the patient and caregiver support you deserve.

Browse Myositis Videos

Check out educational myositis videos. Both patient- and -expert led sessions will help you better understand your rare disease and learn more about opportunies for patients.

Get Involved

You can make a difference in various ways. Learn more about how you can get involved in helping MSU and promoting awareness and education of myositis today.

Inclusion body myositis

Patient Opportunies

Although we serve all patients and caregiers with myositis, inclusion body myositis is different from the other inflammatory myopathies.

What is IBM?

Upcoming Video Support Sessions

Mark your calendar to join for the following sessions. Registration is not available for video support sessions. Join on the date and time listed. View the individual events for full details and join links.

Share your #MyositisLIFE experiences

Share your experiences with myositis on our new patient and caregiver website, #MyositisLIFE. Share your topic-based experience as a story, photo, short video, or meme.

Unexpected lessons learned while facing my new reality

The realities of living with myositis – It affects more than muscles and skin, and for some the heart and lungs. It affects how we see ourselves; our self-esteem and body image. It tricks us, using guilt, into feeling we are a “burden” on others in our life. Don’t miss the full article by Kelly Dennis, “Unexpected lessons learned while facing my new reality.”

Myositis Caregivers

We love and appreciate our myositis caregivers and care partners.

We have put together tips and resources we believe will help you as a member of your loved one’s healthcare team. 

Myositis News and Updates

FDA Warning About Stem Cell Therapies

The Food and Drug Administration (FDA) regulates stem cell products in the U.S. and recently issued a warning about stem cell therapies that are illegal and even harmful.

A Phase 2 Study of Zilucoplan in Patients with Immune-Mediated Necrotizing Myopathy

We are excited to announce our partnership with Ra Pharma for RA101495-02.202: A Phase 2 Study of Zilucoplan in Patients with Immune-Mediated Necrotizing Myopathy. Find out our more and how you can participate.

Experience of pain and fatigue in adult idiopathic inflammatory myopathies (IIM)

Watch the video, “Experience of pain and fatigue in adult idiopathic inflammatory myopathies (IIM)” with Helene Alexanderson, Ph.D. with information about how to adapt physical activity and exercise in relation to pain and fatigue.

IG Shortage Video

In this video, Patrick Schmidt of FFF Enterprises and Michelle Vogel of CSI Pharmacy join MSU to explain the IG shortage. More importantly, if you are a patient affected by the shortage, this video provides the information you need to self-advocate and get your IG therapy. 

Financial Assistance Program

We know firsthand myositis affects every aspect of a persons life.
We are here to help.

Clinical Trial Matching

We have partnered with Antidote Technologies to make clinical trial matching faster, more refined through the search tool, and by providing you will all of the information you need to make a decision to participate in a clinical trial. And, the trial information is easy to read, adding a huge benefit.

Clinical Trial MatchingWatch Clinical Trials 101

Follow Us

Like and Follow MSU on social networking to engage with the myositis community.

2019 MSU Sponsors

We thank the generous sponsors of MSU and #MyositisLIFE.
Learn more about our sponsors below.

© 2019 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.

Login with your credentials


Forgot your details?

Register for Membership

Send this to a friend