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.
Now there is another way to connect with others who live with and care for those with the various forms of myositis.
Introducing the Myositis Support Community, an online support community in partnership with Inspire.
The Myositis Support Community is similar to Facebook, however, it provides a more safe and secure environment for the sensitive topics we discuss as people living with, and caring for those with, myositis (idiopathic inflammatory myopathies).
During registration, you can even choose an anonymous username to help protect your identity further! You have control over your personal information and how it is shared. Patients, caregivers, and professionals will be able to collaborate, share stories and discuss questions and concerns. And the best part – it’s totally FREE to you.
Join us for live virtual support!
Monthly Myositis Patient Video Support Sessions
We currently host five myositis patient (virtual) video support sessions each month on Zoom. 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.
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.
For all patients, living with any form of myositis
1st Wednesday Evening Monthly session
Our Wednesday Evening session starts at 7 PM Eastern Time on the first Wednesday of each month.
Patients with any type of inflammatory myopathies (myositis) are welcome, and encouraged, to join. Register to attend all Wednesday Evening sessions.
3rd Saturday Afternoon Monthly session
Our Saturday Afternoon session starts at 3 PM Eastern Time on the third Saturday of each month.
Patients with any type of inflammatory myopathies (myositis) are welcome, and encouraged, to join. Register to attend all Saturday afternoon sessions.
Sessions by diagnosis type
Dermatomyositis, Polymyositis, and Antisynthetase Syndrome patient support sessions
Last Wednesday of each month, 7 PM ET
This session is for those living with dermatomyositis (DM), clinically amyopathic dermatomyositis (CADM), polymyositis, and antisynthetase syndrome (ASyS) and is held on the last Wednesday of the month at 7 PM Eastern Time.
Inclusion body myositis patient sessions
Last Friday of each month, 5 PM ET
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. Register to attend all Inclusion Body Myositis sessions.
Necrotizing myopathy patient sessions
Last Saturday of each month, 3 PM ET
This session is for those living with necrotizing myopathy and is held on the last Saturday of the month at 3 PM Eastern Time. Register to attend all Necrotizing Myopathy sessions.
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.