We offer several ways for you to get the support and education you deserve! Learn more about Myositis through the experiences of other members.
MSU Facebook Support
Our online support groups started in 2010 and are the founding basis of our nonprofit.
We take patient and caregiver support seriously. We 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 global support groups, patients have the ability to meet and form lasting relationships with others going through the same challenges. Our Facebook groups are closed groups as we value your privacy.
MSU Video Support
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 support session will offer a more personalized experience and help to continue building relationships. Our video sessions will feature many different topics including:
General Support Sessions – A “get-to-know each other” session; open discussion.
Topic Related – A topic is selected to discuss during the video support session such as ILD, coping with Prednisone, chronic pain, Myositis antibodies, purchasing a wheelchair or powerchair, etc.
Learn something new – These video support sessions 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 support and webinars 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 Support & Education 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.
Myositis Community Network
Our website now includes the MSU Myositis Community Network, a full Myositis “social network.” This 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 with your 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.
Join our email updates and newsletter
Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register