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Online Myositis Support

Support for those with myositis and their caregivers

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

Join the Myositis Support 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.

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.

Register to attend all 2020 Wednesday Evening sessions.

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.

Register to attend all 2020 Saturday afternoon sessions. 

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.

Register to attend all 2020 Necrotizing Myopathy sessions.

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.

Register to attend all 2020 Inclusion Body Myositis sessions.

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.

Upcoming EventsVideo Support Help

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.

MSU Facebook Support Groups

MSU Membership

Register for your free MSU membership account!

© 2020 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

The best way to prevent catching or spreading coronavirus is thorough hand washing, social distancing, and social isolation. Should you begin experiencing symptoms of coronavirus, which include fever, cough, and shortness of breath, please contact your doctor immediately. View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

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