Myositis Online Support

Myositis Online Support Programs

We offer several ways for you to get the support and education you deserve! Learn more about Myositis through the experiences of other members.

Our Facebook Support Groups

MSU myositis support groupsOur online support groups started in 2010 and are the basis of why we applied for and received approval as a 501(c)(3) nonprofit organization.

We take patient and caregiver support seriously. We now operate three closed Facebook support groups designed to help Myositis patients, caregivers and care partners, family members, and friends.

Our Facebook support groups stand apart from the others not only by offering emotional support and much-needed laughter but also by educating our members to help them learn as much as possible about Myositis so they can effectively advocate for themselves.

Many myositis patients will never meet another patient due to the rarity of the disease and because patients are spread out across the globe. With our support groups, patients have the ability to meet and form lasting relationships with other going through the same challenges.

Our Facebook groups are closed groups as we value your privacy.

View our Facebook Support Groups

Video Chat Support and Learning

Extending our online support platform to include Video Support just makes sense. Some may never meet another Myositis patient in person as we are spread around the globe due to the rarity of our disease. Having the ability to talk face-to-face in a video chat will offer a more personalized experience and help to continue building relationships. Our video chat will feature many different topics including:

General Chat – A “get-to-know each other” session where there is open discussion.

Topic Related – A topic is selected to discuss during the video chat such as ILD, coping with Prednisone, chronic pain, Myositis antibodies, etc.

Learn something new – These video chats focus on teaching others how to do something specific like paint, crochet, scrapbook, journal, and many other ideas. This will give people an opportunity to pick up a hobby that they are able to do despite living with a debilitating disease.

Q&A Sessions/Webinars – Video chats focused around specific topics and Q&A’s to offer you a chance to learn more about Myositis, treatments, complications, MSU, as well as from presenters.

Video Chats led by Medical Professionals: These are often topic-related to give patients and others a chance to learn, discuss, and ask questions. A recent example is Dr. Chung’s video chat about Myositis and Exercise.

We want our members involved in our organization. We were founded by Myositis patients, for Myositis patients. Remember, we value you and want you to learn as much as possible to live a better life.

Register for an upcoming Video Chat Learn how to use Video Chat

The MSU online Myositis Network

Our website now includes the MSU Myositis Network, a full Myositis “social network.” Our Myositis Network provides members the opportunity to post updates, meet others with the same conditions, make lasting friendships, join and participate in groups, and much more. This is a growing service that is included in free membership.

Join us as a member today and start using the MSU Myositis Network! You must be a registered member of MSU to use our Myositis Network. Register here. 

View the Myositis Network

© Myositis Support and Understanding Association, Inc. 2010-2017. All Rights Reserved. MSU is a 501(c)(3) nonprofit organization.

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Get your Zebra Shirts & Hoodies Today!

Campaign for Myositis Awareness Month, May 2017

Purchasing a shirt from this booster will help us, Myositis Support and Understanding, with our many patient support programs, education, financial assistance for patients and upcoming programs.

This year, 2017, Myositis Support and Understanding’s awareness month theme is “Sometimes Zebras have spots!” We want to raise awareness about how the experiences, symptoms, and complications of this rare disease are different, even among the patients with the same disease. Doctors are now trained, when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments); when in the past, they only looked for the most common ailments.


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Hi, this may be interesting to you: Myositis Online Support! The link is included below: --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.