Myositis Support and Understanding

We are dedicated to improving the lives of Myositis patients. Myositis is a rare, chronic, often-disabling, immune-mediated muscle and skin disease without a cure and with limited-to-no treatment options. Learn more about Myositis and how MSU is helping give patients and caregivers a brighter future.

Myositis Support and Understanding (MSU) is a completely volunteer-managed, patient-centered, 501(c)(3) nonprofit. Our focus is the Idiopathic Inflammatory Myopathies including dermatomyositis, inclusion body myositis, polymyositis, and necrotizing autoimmune myopathy.

Become a Member

Register today and become a member of MSU. Membership is free and provides  access to the MSU Myositis Network, our very own Myositis social network.

Register Today

Subscribe for email updates

By subscribing to our email updates and the MSU Myositis Newsletter, you will receive the latest news, myositis events and updates, and the latest on everything Myositis-related!


Learn about Myositis

As a rare and complicated disease, and with several types, learning about your disease is important. Read about the type of myositis you have and share to educate others.

Educate yourself

Myositis Awareness Month is coming soon, May 2018!

MSU is currently in the planning stages for the events for Myositis Awareness Month.

However, in the meantime, we are looking for residents of each state and city to request proclamations from their Mayor and Governor to proclaim Myositis Awareness Month.

We have made the process easy this year by providing a guide and links to the information you need. Will you submit a proclamation request?

(Prior to sending a request, please click the button below for more details)

Myositis Awareness Month
List your Myositis Doctors

This is an effort to create a better physician directory of doctors with myositis experience including rheumatologists, neurologists, neuromuscular specialists, dermatologists, rehabilitation specialists, pulmonologists, and others. This will be very helpful for our members and for new patients.

Your input will make a difference! It only takes a minute or two.

See Rare Disease Day Videos

As a part of Rare Disease Day 2018, we held two live, online video education sessions.

The first was with Dr. Victoria Werth, MD, “Overview and new developments in Dermatomyositis.” We thank Corbus Pharmaceuticals for helping to plan this Rare Disease Day session.

The second session, “IV and SubQ IG for Myositis,” was with Vicky Starr, RN, IgCN,  and also includes some practical and insurance tips for patients on IG therapy.

See our Rare Disease Day page to watch these educational and informative videos.

MSU Announces plans for smartphone mobile app

As part of our lofty goals, and based on the needs of those living with myositis, we are happy to announce that planning is in place to develop a full-featured smartphone application for iOS and Android!

This ambitious, yet expensive, project will include many features helpful for patients, caregivers, physicians, and other healthcare providers.

We plan to announce the full objectives for this app in mid-to-late 2018.

Myositis Resources and How to Get Involved

What is Myositis?

Our focus, Idiopathic Inflammatory Myopathies, or Myositis, includes Dermatomyositis, Inclusion Body Myositis, Polymyositis, and Necrotizing Autoimmune Myopathy. Start learning more about myositis.

Educate Yourself

Myositis Programs and Services

Check out the Myositis patient-centered programs and services we currently offer including education, financial assistance, and support. We are developing new programs to help myositis patients and caregivers.

See Programs we offer

Get Support that makes sense

We bring the support right into your home. When living with this often-debilitating disease, it’s tough to get out sometimes. Join our FB groups, video support sessions, and our onsite Myositis Network.

See support options

Read Personal Myositis Stories

We learn so much from the experiences of other myositis patients and caregivers. Start reading our member-submitted stories, watching videos, and see other helpful content.

Start Reading

Myositis Clinical Trial Matching

Easier way to view and locate myositis clinical trials. We have partnered with Antidote! Easy-to-read clinical trial information and location. Rare Disease patients are needed for important studies.

Clinical Trial Matching

Get Involved

We are in this together! So, why not get involved? We have many opportunities available for volunteers, support group administrators, and board members.

Get Involved Today!

Effortless Ways to Help

We have joined with many different resources to help you help us help you! See some of the ways you can help by simply doing the things you normally do!

Find ways you can help

Myositis Events

We offer free myositis and related events. Whether they are myositis-specific video support sessions or educational sessions and webinars, they are always free and easy to join.

Upcoming Myositis Events

Shop the MSU Store

Are you looking for MSU myositis branded materials to show your support and to help raise awareness of the rare disease myositis? We have products just for you including wristbands, educational materials, apparel, pens, and more. Start shopping today!

Shop MSU Gear

Shop MSU on Cafepress

We have expanded our shopping options to provide you with many different ways to show your support. From Shirts and tote bags, to mugs, drinkware, and other fun stuff, shop the MSU Cafepress store today. New, updated designs coming soon!

Shop MSU on Cafepress

Myositis Support and Understanding // Patient-Centered Nonprofit

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© Myositis Support and Understanding Association, Inc. 2010-2018. All Rights Reserved. MSU is a patient-centered 501(c)(3) nonprofit organization.

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