Myositis Support and Understanding, MSU

Our New Look

Same patient-centered nonprofit. Just a new look.

We have rebranded!

Welcome to our new look! We are still the same patient-centered, volunteer-managed leading myositis support nonprofit organization, just with a new look of empowerment, hope, and change to come.

We have decided to update our brand for several reasons that will make sense as we begin to release new programs, services, and get more involved in myositis research.

For the time being, please pardon our website as we continue to make updates to the design and layout. Once complete, we will notify you via email if you are a member. Membership is FREE! Join today.

Featured Myositis News and Updates

Inclusion Body Myositis Functional Rating Scale (IBMFRS)

If you have been diagnosed with inclusion body myositis you may be wondering how you can track your disease progression in a way that would compare to other patients. The Inclusion Body Myositis Functional Rating Scale (IBM-FRS) is exactly what you are looking for.

Inclusion Body Myositis Specialty Clinic at Washington University, St. Louis

New IBM Specialty Clinic at Washington University in St Louis MO to be headed up by Dr. Conrad “Chris” Weihl, a world renown clinician and researcher in the study of IBM. Dr. Weihl told us yesterday, “I am excited to create a unique clinic space that will enable patient care and facilitate clinical research studies.”

The first step when approaching a patient with muscle weakness – Differential diagnosis of idiopathic inflammatory myopathies in adults

The first step when approaching a patient with muscle weakness – Differential diagnosis of idiopathic inflammatory myopathies in adults. Information on the differential diagnosis of adults with muscle weakness. Differential diagnosis is the process of distinguishing a specific disease from others with similar symptoms and features. The paper points out the irony that the most commonly used diagnostic criteria for identifying the Idiopathic Inflammatory Myopathies (IIM) can be applied only after all other non-autoimmune muscle diseases have been ruled out.

New Year, New Look, New Partnership

MSU has come a long way since the beginning in 2010 with our first Facebook support group and subsequent 501(c)(3) nonprofit status approval in 2015. See some of what we have done and continue to do.

Smartphone App for Myositis

Free app in partnership with Portable Genomics

It is with great excitement to announce the release of the”NuMe” App for myositis, a pilot study App in partnership with Portable Genomics. Currently available for iPhone users, the App is free and enables myositis patients and caregivers to better collect, manage and share important health data with treatment teams, researchers and the pharmaceutical industry.

The data you track and collect, for your own use, is secured on your smartphone and personal cloud. If you consent to share data for research purposes your personal information is scrubbed to protect your privacy; you have the ability to opt in or out of sharing at any time.

NEW: Rash Monitoring module now available in the app!

PG, MSU App for myositis

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.

MSU gold seal of Transparency 2018

Myositis Support and Understanding

Empowering the Myositis Community

MSU is instrumental in helping to improve the lives of patients fighting this rare, complicated, immune-mediated muscle, skin, and often multi-organ disease by being the very first patient-centered organization to offer live, online video patient support and education sessions that simply make sense for those living with a muscle disease that involves limited mobility and with patients spread across the world.

MSU also provides a “Simply Put” education series, offers clinical trial matching, advocacy, several online support options, awareness building programs, and need-based financial assistance for patients.

More about MSU

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

What is Myositis?

Our focus, Idiopathic Inflammatory Myopathies, or myositis, includes Dermatomyositis, Inclusion Body Myositis, Polymyositis, Necrotizing Autoimmune Myopathy, and Orbital Myositis. Start learning more about myositis.

Educate Yourself

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. Join our FB groups, video support sessions, and our newly added Myositis Support Community.

See support options

#MyositisLIFE

We learn from the experiences of other myositis patients and caregivers. Read and watch member-submitted #MyositisLIFE content, and look closer at the realities of myositis.

Explore #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!

Effortless Ways to Help

We have joined with many different resources to help you help us help you! See some of the ways you can help by simply doing the things you normally do!

Find ways you can help

Myositis Events

We offer free myositis and related events. Whether they are myositis-specific video support sessions or educational sessions and webinars, they are always free and easy to join.

Upcoming Myositis Events

Myositis Support and Understanding

Empowering the Myositis Community

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