Myositis Patient and Caregiver Support

Support Community In partnership with Inspire
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.

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.

Download App Visit the Community

Ready to Join?

  • Download the App or Go to Myositis.Inspire.com
  • Click on the button “Join This Community”
  • Follow the basic instructions and register yourself using email or social networking.
  • Once completed, you will receive a confirmation email.

That’s it! Now you are ready to start CONNECTING!

NEW – 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.

We create our own individual movement and protein intake plan, utilize support partners and join 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 7:30 PM ET / 6:30 CT / 5:30 MT / 4:30 PT

If you are living with myositis, or you are a caregiver or care partner, join our new Club, Myositis Support.

Clubhouse is a free audio-only app available for mobile devices and you can find it in your app store.

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 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 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.

Women with Myositis Zoom support session

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.

Parenting with Myositis Zoom support session

2nd Tuesday of each month, 7 PM ET / 6 CT / 5 MT / 4 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.

Dermatomyositis, Polymyositis, and Antisynthetase Syndrome patient support session

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.

Inclusion body myositis patient session

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.

Necrotizing myopathy patient session

Last Saturday of each month, 3 PM ET / 2 CT / 1 MT / 12 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.

MSU Membership

Has your information changed since you registered? Why not update it today?

Register

Upcoming Events

© 2021 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.

View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

Log in with your credentials

or    

Forgot your details?

Create Account

Send this to a friend