Help researchers and clinicians better understand how patients with myositis and other autoimmune conditions feel about COVID-19/the novel coronavirus.
The primary focus of Myositis Support and Understanding is muscle diseases which are referred to as “Idiopathic Inflammatory Myopathies” or “Acquired Myopathies,” meaning muscle diseases which are typically not inherited and are caused by the immune system attacking muscles, connective tissue, blood vessels, and/or the skin.
Managing Myositis Patient Care During the COVID-19 Public Health Crisis
, , Featured, Myositis, Video
Dr. Aggarwal answers patient-submitted questions about COVID-19 and myositis with topics including proper precautions to stay safe, information about...
Watch to learn about different types of orthotics and braces that may be helpful for people with myositis. We...
Clinical Trial of Arimoclomol in Inclusion Body Myositis during the COVID-19 Pandemic
, , Featured, Inclusion Body Myositis (IBM), News
Information from Orphazyme A/S about the Clinical Development of Arimoclomol in sIBM during the COVID-19 Pandemic. Read a statement...
Learn more about how to apply and qualify for Social Security Disability Benefits when living with the inflammatory myopathies,...
Helpful hints (not resolutions!) to start off the new year with a plan to work toward great mental health...
Arimoclomol receives US Fast Track designation in sporadic Inclusion Body Myositis
, , Featured, Inclusion Body Myositis (IBM)
Orphazyme's Arimoclomol receives US Fast Track designation in sporadic Inclusion Body Myositis, an incurable rare progressively debilitating muscle-wasting disease...
Summary of Dysphagia in patients with sporadic inclusion body myositis: Management challenges
, , Featured, Inclusion Body Myositis (IBM)
A summary of the review, including Coping Strategies provided by MSU International Science Advisor and IBM patient, Bill Tillier....
Watch "Surviving the Holidays with Myositis" a webinar on #MyositisLIFE. Learn tips to get through the holidays living with...
The Food and Drug Administration (FDA) regulates stem cell products in the U.S. and recently issued a warning about...
A Phase 2 Study of Zilucoplan in Patients with Immune-Mediated Necrotizing Myopathy
, , Featured, Necrotizing Autoimmune Myopathy, News
We are excited to announce our partnership with Ra Pharma for RA101495-02.202: A Phase 2 Study of Zilucoplan in...
Myositis Support and Understanding (MSU) partners with the University of Pittsburgh for a new NIH-sponsored study entitled, “Myositis Patient...
Announcing the Mary Jane DeLauder Memorial Fund for inclusion body myositis
, , Featured, Inclusion Body Myositis (IBM), News, Press
Mary 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
, , Dermatomyositis, Featured, News, Video
Dr. Victoria Werth joined us live online for a video education session titled, "Skin findings seen with myositis autoantibodies...
Second Annual “A Day of Remembrance” a video event to honor and remember those we have lost with myositis....
The success of the Registry effort depends on the cooperative efforts of IBM patients around the world. The IBM...
Watch the AllStripes, formerly RDMD, video session we did in 2020 to learn more about the Inclusion Body Myositis...
An Update on the Clinical Studies Using Arimoclomol as a Potential Treatment for Sporadic Inclusion Body Myositis Video
, , Featured, Inclusion Body Myositis (IBM)
The ongoing Arimoclomol Clinical Trial for sIBM continues to generate a lot of questions from our community. As part...
The Performance of the EULAR/ACR IIM classification criteria in an expert-defined 10 year incident cohort
, , Featured, Myositis
This paper assesses the performance of EULAR/ACR classification criteria in a cohort of IIM cases and examines how subtypes...
