The pain med taper debacle

Myositis Pain and Opioids Survey

The opioid crisis is real and should be addressed, but there is no excuse for the damage it has done to people with incurable pain. Included is a survey for those with myositis regarding pain.

In light of this crisis for those living with myositis, MSU is leading an initial survey to help determine if a larger study about Myositis, Pain, and Opioids is warranted.

We have interest from the research community, however, we need initial data first.

Survey ends June 4, 2019.

Read the article Go to Survey
May is Myositis Awareness Month

Upcoming Myositis Events

Video Support Sessions

Add to your calendar and join us

May is Myositis Awareness Month

Register today to attend these events

Featured Myositis News

PR: May is Myositis Awareness Month

In observance of Myositis Awareness Month during the month of May, MSU has launched a new patient and caregiver experience website, www.MyositisLife.org

How Meditation and Yoga Can Improve Life for Seniors and Caregivers

Yoga and meditation offer a wealth of opportunities to seniors and caregivers. While both practices might appear complex on the surface, they are beginner-friendly, regardless of age or ability. Read on for how to get started and the many ways these activities can improve your quality of life. Ancient practices with modern day perks Both meditation and yoga are time-tested […]

Education and Support are key

We have hosted several myositis experts to lead live, online video sessions throughout 2018. All sessions were held online with live participation. These sessions were recorded and we hope you will take advantage of the educational opportunities these provide for you and your family members.

Find the videos on our YouTube page and share with your loved ones.

Myositis Support Community in partnership with Inspire

Announcing a new Myositis Support Community

For myositis patients and caregivers

If you are living with one of the idiopathic inflammatory myopathies (myositis) or you are a care partner, family member, or friend of someone who is, we invite you to join the Myositis Support Community to connect, collaborate, share stories and discuss questions and concerns, as well as to feel empowered.

Living with a rare muscle disease is hard enough. Why not get support?

Read the full announcement and learn more about MSU programs.

Join the Myositis Support Community

Register for free membership

Join us as an official member and you will receive email updates when new awareness materials are available and have your very own MSU Myositis Network account and profile, and much more. We are working to improve our onsite community, along with many other tech updates and offerings.

Register for your Membership Login

MSU and Myositis: Take Action

Myositis Programs and Services

Check out the Myositis patient-centered programs and services we currently offer including education, financial assistance, and support. We are developing new programs to help myositis patients and caregivers.

See Programs we offer

Support that makes sense

We bring support directly to you! It can be tough to get out with this often-debilitating disease. Patients and Caregivers, join our newly launched 24/7 Myositis Support Community!

See support options

#MyositisLIFE New Site

We learn from the experiences of other myositis patients and caregivers. Read and watch patient and caregiver submitted stories, short videos, images, and memes, and submit yours.

Visit #MyositisLIFE

Clinical Trial Matching

Easier way to view and locate myositis clinical trials. We have partnered with Antidote! Easy-to-read clinical trial information and contacts. Patients are needed for important studies.

Clinical Trial Matching

Get Involved

We are in this together! So, why not get involved? We have many opportunities available for volunteers, support group administrators, and board members.

Get Involved Today!

Myositis Resources

We take extra time to find, highlight, and create resources for those living with and caring for someone with myositis. Find your myositis resources and downloads, and share them with friends.

Get Myositis Resources

Myositis Support and Understanding

2019 Sponsors

Corbus Pharma
Orphazyme
CSI Pharmacy
Diplomat Specialty Infusion

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