Join the Myositis Support Community
The MSU online support groups started in 2010 and are the founding basis of our nonprofit.
We take patient and caregiver support seriously. We operate our main community, Myositis Support Community, in partnership with Inspire, as well as three closed Facebook support groups designed to help Myositis patients, caregivers and care partners, family members, and friends.
Our support groups offer the needed emotional support as well as much-needed education. We are also empowering our members to self-advocate!
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 Monthly Video Support sessions
Monthly Myositis Patient Video Support Sessions
We currently host four myositis patient video support sessions each month. All sessions are private and never recorded. For security purposes, registration is required once for each of the sessions below. See individual event dates on the events calendar page.
Event times are shown in Eastern Time. Convert to your timezone at https://www.thetimezoneconverter.com.
Disclaimer: Myositis Support and Understanding Association (MSU) is a 501(c)(3) nonprofit organization. MSU does not provide medical and mental health advice or treatment. Information provided by Myositis Support and Understanding is not intended as medical advice and is not a replacement for care from a doctor, therapist, or other healthcare provider. If you have a medical or mental health emergency, call your country’s emergency number immediately; 9-1-1 in the United States.
Wednesday Evening sessions, for all with myositis
Our Wednesday Evening session starts at 7 PM Eastern Time on the first Wednesday of the month. Patients with all forms of inflammatory myopathies (myositis) are welcome, and encouraged, to join.
Saturday Afternoon sessions, for all with myositis
Our Saturday Afternoon session starts at 3 PM Eastern Time on the third Saturday of the month. Patients with all forms of inflammatory myopathies (myositis) are welcome, and encouraged, to join.
Necrotizing myopathy patient sessions
This session is for those living with necrotizing myopathy and is held on the last Saturday of the month at 3 PM Eastern Time.
Inclusion body myositis patient sessions
This session is for those living with inclusion body myositis and is held on the last Friday of the month at 5 PM Eastern Time. Caregivers are also welcome when invited by the person living with inclusion body myositis.
Extending our online support platform to include video support in 2016 was an important decision to better connect myositis patients across the globe. With myositis being rare, some patients have never met another person living with the same disease and now they can. Having the ability to talk face-to-face in a video support session offers a more personalized support experience and helps to continue building relationships.
Be sure to also check out our educational webinars
Q&A Sessions/Webinars – Unique webinars focused on specific topics, often including Q&A, designed to educate, inform, and empower patients and caregivers.
MSU was founded by Myositis patients, for Myositis patients and caregivers and we want you involved! Contact us with your ideas, or if you are a medical professional and you are interested in discussing hosting a session with us.
Facebook Support Groups
We host three closed (private) Facebook groups for myositis; Myositis Support, Myositis Caregivers, Family Members and Friends, and Inclusion Body Myositis Support and Understanding. Learn more about our Facebook groups, where MSU started.