MSU is a forest . . .

Rare Disease Day 2021 – As you may know by the common idiom you can’t see the forest for the trees,” it is often easy to lose your perspective when you are so focused on the trees or the details of a situation. Being diagnosed with myositis can be overwhelming. There is so much information that we tend to lose sight of the most important part – the forest,” or in this casethe help and support MSU extends. MSU can help you see the forest as well as the trees.  

Like a forest is made up of many trees, MSU is made up of many resources and guidancecreating the strong community it is.

Patient Financial Assistance

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

Donate Plasma

Plasma donations are down 40% since the lockdown, and without an increase in plasma donors there could be a shortage of IG (IVIG, SCIG) used to treat myositis and many other diseases. Learn more, find a plasma donation center, and invite your family and friends to donate and join the #ItsMyTurn campaign.

Myositis Support
Myositis Programs
Explore Myositis
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!

COVID-19 and Myositis Resources

We have put together a list of trusted resources for COVID-19 including an update to our plans at MSU to pause business as usual and focus mostly on supporting our fellow patients and caregivers in this difficult time.

Myositis News and Updates

MSU joins the Rare Advocacy Movement (RAM) DEI program

Diversity, Equity, & Inclusion are not buzz words, a trend, or a P.R. campaign for our organization. MSU has chosen to authentically approach DEI through the implementation of meaningful solutions developed by the “Our Lives Matter” DEI Initiative.

A Closer Look: Clinical Trials and the PRESIDIO Study

Clinical trials are a key research tool for advancing medical knowledge and patient care. Join Kezar Life Sciences as Dr. Noreen Henig provides an overview of the clinical trial process, their importance in research and bringing new therapies to the market. Dr. Henig shares information around the PRESIDIO Study for PM, DM, and IMNM.

Exercise In Place Part 5: Supporting the Caregiver

For patients, caregivers, family and friends, watch Part 5 of our popular Exercise In Place series with the OT/PT team at Johns Hopkins Myositis Center.

Upcoming Myositis Video Events

The Grieving Project by LIsa Sniderman, Aoede

Have you ever grieved your losses due to chronic illness? Have you grieved over how your life has changed as a caregiver?

Award-winning artist, Aoede, Lisa Sniderman, has been living with dermatomyositis for over 12 years. She recognized that she forgot to grieve her own illness and realized that through music, she could reach many others who may have also forgotten to grieve.

“The Grieving Project is a road map to our hearts, an invitation for you to grieve your loss, your change, your unexpected and unwanted transformation, and the inspiration and encouragement you need to awaken, express, rejuvenate, activate, connect, shine and truly thrive!”

More about The Grieving Project

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!

What is myositis?Take Action

2021 MSU Sponsors

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

Like and Follow Myositis Support and Understanding (MSU)
on our social networks to engage with the myositis community.

© 2021 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.

The best way to prevent catching or spreading coronavirus is thorough hand washing, social distancing, and social isolation. Should you begin experiencing symptoms of coronavirus, which include fever, cough, and shortness of breath, please contact your doctor immediately. View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

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