Join the Myositis Support Community
Free, anonymous, 24/7 support, just for the myositis community
Myositis patients and caregivers can connect with others who understand what they are going through by joining our support community via the Inspire iOS app or by visiting our Myositis Support Community.
Myositis Support Clubhouse Rooms
Join our Clubhouse Club, Myositis Support, for weekly support rooms, and for pop up discussions, as well as for our newest program, Myositis Support Gets Moving!
Clubhouse is a free audio-only social media app. Our Club, Myositis Support, is members-only, myositis patients and care partners, to ensure we provide the safest space for you to share and connect. Join the Club and be notified of upcoming rooms.
NEW – Weekly Myositis Support Gets Moving
Every Thursday at 1 PM ET / 12 PM CT /11 AM MT / 10 AM PT
If you are living with myositis, or you are a caregiver or care partner, join our new Club, Myositis Support for this and all rooms.
Research shows that movement/exercise is beneficial for those living with myositis, no matter which type. And, we need proper protein intake to help build/maintain muscle. In this group, which is NOT an exercise group, we create our own individual movement and protein intake plans, utilize support partners and join together every Thursday on Clubhouse to discuss successes, struggles, and barriers. Open to ALL who are living with Myositis, no matter where you are in your progression. Let’s Get Moving any way we can, together.
Weekly Clubhouse Support Room
Every Sunday at 7 PM ET / 6 CT / 5 MT / 4 PT
If you are living with myositis, or you are a caregiver or care partner, join our Club, Myositis Support. to be a part of our Sunday evening support groups. We share about our lives with myositis, the challenges and struggles, and the wins and triumphs. You are never required to speak or share. You can join and listen if that is what’s most comfortable for you. This is an intimate room just for people impacted by myositis, and we invite you to join us.
Monthly Men with Myositis Clubhouse Support Room
First Monday of the month at 7 PM ET / 6 CT / 5 MT / 4 PT
Men with Myositis is a monthly group on Clubhouse. It’s a safe space for men to discuss their lives with myositis, and to discuss more private topics they may not feel comfortable sharing in our mixed-gender groups.
This is held at the same time as the Women with Myositis Zoom support group.
Monthly #MyositisLIFE Zoom Sessions
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.
You do not have to turn your camera on, and you are never be required to speak. Just sh0wing up and listening and being there to support yourself and others is so helpful. And, a great way to get comfortable and realize we provide a safe environment to discuss your experiences, hopes, challenges, successes, the emotional ups and downs, and how you adapt to life with this group of rare diseases, myositis.
For ALL patients, living with any form of myositis
1st Wednesday Evening Monthly Zoom support session
1st Wednesday of each month, 7 PM ET / 6 CT / 5 MT / 4 PT
Join us for our Wednesday Evening session for all who are living with myositis, no matter which type.
3rd Saturday Afternoon Monthly Zoom support session
3rd Saturday of each month, 3 PM ET / 2 CT / 1 MT / 12 PT
Join us for our Saturday Afternoon session for all who are living with myositis, no matter which type.
#MyositisLIFE Zoom Groups
Click the title of the session to register. You will receive an email with the details to join. You only need to register once per session to join monthly.
1st Monday of each month, 7 PM ET / 6 CT / 5 MT / 4 PT
This is a session for ALL women living with myositis of any type.
2nd Monday of each month, 7 PM ET / 6 CT / 5 MT / 4 PT
A session for Young Adults between ages 18 and 40. For liability, you must be at least 18 years old. This group is for young adults with any form of Myositis.
Quarterly – See Event for dates. Held on a Saturday, starting at 3 PM ET / 2 CT / 1 MT / 12 PT
This is a session for ALL parents living with myositis and raising children. Whether you are a parent, grandparent, or guardian, if you are raising children, join us in this space just for you.
3rd Wednesday of each month, 7 PM ET / 6 CT / 5 MT / 4 PT
This session is for those living with dermatomyositis (DM), clinically amyopathic dermatomyositis (CADM), polymyositis, and antisynthetase syndrome (ASyS) and is held on the 3rd Wednesday of the month.
Last Friday of each month, 5 PM ET / 4 CT / 3 MT / 2 PT
This session is for those living with inclusion body myositis and is held on the last Friday of the month. Caregivers are also welcome when invited by the person living with inclusion body myositis.
Last Saturday of each month, 7 PM ET / 6 CT / 5 MT / 4 PT
This session is for those living with necrotizing myopathy and is held on the last Saturday of the month.
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.
Facebook Support Groups
We host four closed (private) Facebook groups for myositis; Myositis Support, Myositis Caregivers, Family Members and Friends, Inclusion Body Myositis Support and Understanding, and Necrotizing Autoimmune Myopathy Support and Understanding. Learn more about our Facebook groups, where MSU started.