We are excited to announce our partnership with Ra Pharma for RA101495-02.202: A Phase 2 Study of Zilucoplan in...
Articles related to Myositis, Myositis Support and Understanding, and other relevant topics to inflammatory myopathies and autoimmune disease research, updates, knowledge, and education.
MSU is an organization which is operated by volunteers who understand Myositis on a very personal level. As patients with Myositis, we, too, experience the frustration of living with this disease which is rare and treatments which are harsh.
We understand that our medical team is extremely important to us, but that they have no way to truly understand what it is really like to live with our rare and complicated disease. So we lean on each other and learn from each other through our support groups, our website, and our nonprofit organization.
We continue to harness enthusiasm and determination focusing on educating each other, our friends and families, and the medical profession. Utilizing the energy we create working with each other to be a valuable force to the understanding and advocacy of these diseases and to provide assistance and support to people with Myositis.
The future of Myositis is bright, as is our future as an organization. We will post updates as we work towards our goals. We appreciate your support!
Experience of pain and fatigue in adult idiopathic inflammatory myopathies (IIM)
Myositis Support, , Featured, News, VideoWatch the video, "Experience of pain and fatigue in adult idiopathic inflammatory myopathies (IIM)" with Helene Alexanderson, Ph.D. with...
In this video, Patrick Schmidt of FFF Enterprises and Michelle Vogel of CSI Pharmacy join MSU to explain the...
Myositis Support and Understanding (MSU) partners with the University of Pittsburgh for a new NIH-sponsored study entitled, “Myositis Patient...
Michelle Vogel of CSI Pharmacy, a sponsor of MSU and MyositisLIFE.org, provides information about the national Ig shortage. These...
Announcing the Mary Jane DeLauder Memorial Fund for inclusion body myositis
Myositis Support, , Featured, Inclusion Body Myositis (IBM), News, PressMary Jane's passion for welcoming and educating was well-known throughout the myositis community. That’s why we can think of...
Skin findings seen with myositis autoantibodies and treatment of skin in dermatomyositis
Myositis Support, , Dermatomyositis, Featured, News, VideoDr. Victoria Werth joined us live online for a video education session titled, "Skin findings seen with myositis autoantibodies...
Plasma Services Group (PSG) joined us for a live video discussion about donating plasma for medical research. You could...
CSI Pharmacy joined us for a live video education session about IG therapy, both IVIG and SCIG. Health insurance...
A session that covered safety and effects of exercise in recent onset and established adult and juvenile IIM. Dr....
Second Annual “A Day of Remembrance” a video event to honor and remember those we have lost with myositis....
In observance of Myositis Awareness Month during the month of May, MSU has launched a new patient and caregiver...
May is Myositis Awareness Month and we want to introduce our brand new website where your experiences get the...
Alyssa Smith wrote and sings a new song, "Save Me" and it will premiere on Feb. 28th, Rare Disease...
Identification of Predictors for Interstitial Lung Disease in Myositis Patients: A Systematic Review
Myositis Support, , Featured, Myositis, NewsInterstitial lung disease (ILD) is a well-recognized complication in the spectrum of diseases known as the idiopathic inflammatory myopathies...
Introducing the NEW Myositis Support Community! The Myositis Support Community is similar to Facebook, however, it provides a more...
RDMD and MSU Collaborating for IBM Research
Myositis Support, , Featured, Inclusion Body Myositis (IBM), NewsWe are excited to announce a new collaboration with RDMD, a company that aims to jumpstart research for patients...
Join MSU in celebrating Rare Disease Day, Feb. 28th, and Rare Disease Week on Capitol Hill. We are also...
DETERMINE - a Phase 3 trial designed to evaluate the efficacy and safety of lenabasum for the treatment of adults...
MSU has come a long way since the beginning in 2010 with our first Facebook support group and subsequent...