What is Myositis?

Our focus is the Idiopathic Inflammatory Myopathies, or myositis, which includes Dermatomyositis, Inclusion Body Myositis, Polymyositis, Necrotizing Autoimmune Myopathy, Juvenile Myositis, and Orbital Myositis. Also, antisynthetase syndrome and MCTD. Learn more about the various types of myositis.

Myositis Basics

Online Events

MSU is the only myositis nonprofit that offers live video support for patients and caregivers, as well as educational sessions. Check out the upcoming live, online video education and support sessions. Online support sessions are a great way to meet others, get tips and ideas, and share experiences. Be sure to join us and get the support you deserve.

Event Listing

Join the Board

We are seeking those interested who support our mission and vision to apply to join the Board of Directors. See the requirements, expectations, and submit your CV and completed application for consideration by April 7, 2019.

Board Application

Upcoming Events

There are no upcoming events at this time.

New Partnership Programs

MSU and RDMD collaborating to Accelerate drug development in IBM

RDMD for IBM patients

A partnership with RDMD for those with IBM

RDMD helps rare disease patients retrieve, access, and accelerate research with their medical records. They work with your hospitals so you can be in control of your medical records data. If you choose to participate in research, de-identified information from your records can be shared with researchers to advance the understanding of your condition. And, you are in control of the sharing of these records at all times through informed consent and opting in-or-out of sharing.

NEW: Live Video Session with RDMD. See details.

MSU and Portable Genomics, teaming up to bring a tailored health data management platform to myositis patients

Smartphone App for Myositis

Free app in partnership with Portable Genomics

The NuMe App for myositis is a pilot study App in partnership with Portable Genomics. Currently available for iPhone users, the NuMe 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.

All data resides on your personal cloud and you control what you share. Learn more and download the app.

NEW: Rash Monitoring module now available in the app!

Featured Myositis News

An Update on the Clinical Studies Using Arimoclomol as a Potential Treatment for Sporadic Inclusion Body Myositis Video

The ongoing Arimoclomol Clinical Trial for sIBM continues to generate a lot of questions from our community. As part of our commitment to providing the latest information on research and clinical trials, we asked Dr. Mazen Dimachkie, Principal Investigator for the Phase II/III Arimoclomol Studies and Professor of Neurology and Director of the Neuromuscular Division at University of Kansas Medical Center, if he would provide us with an update.

The Performance of the EULAR/ACR IIM classification criteria in an expert-defined 10 year incident cohort

This paper assesses the performance of EULAR/ACR classification criteria in a cohort of IIM cases and examines how subtypes of IIM identified by the criteria compares to expert opinion. Based on the results, the EULAR/ACR criteria were highly accurate in identifying cases of IIM.

Clinical Trials 101

Learn about how clinical trials work in this educational and interactive video session led by Lindsey Wahlstrom-Edwards, Head of Partnerships with our partner, Antidote Technologies. View and download the slides as well.

Song “Save Me” releases Rare Disease Day 2019

Alyssa Smith wrote and sings a new song, “Save Me” and it will premiere on Feb. 28th, Rare Disease Day. “Save Me” is a song that most likely ‘sings to the tune’ of how we feel living with the rare, chronic autoimmune disease myositis. Premiers on Rare Disease Day!

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

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!

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

Empowering the Myositis Community

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