Myositis Support and Understanding
We are dedicated to improving the lives of Myositis patients. Myositis is a rare, chronic, often-disabling, immune-mediated muscle and skin disease without a cure and with limited-to-no treatment options. Learn more about Myositis and how MSU is helping give patients and caregivers a brighter future.
Myositis Support and Understanding (MSU) is a completely volunteer-managed, patient-centered, 501(c)(3) nonprofit. Our focus is the Idiopathic Inflammatory Myopathies including dermatomyositis, inclusion body myositis, polymyositis, and necrotizing autoimmune myopathy.
Myositis Awareness Month is coming soon, May 2018!
MSU is currently in the planning stages for the events for Myositis Awareness Month.
However, in the meantime, we are looking for residents of each state and city to request proclamations from their Mayor and Governor to proclaim Myositis Awareness Month.
We have made the process easy this year by providing a guide and links to the information you need. Will you submit a proclamation request?
(Prior to sending a request, please click the button below for more details)
This is an effort to create a better physician directory of doctors with myositis experience including rheumatologists, neurologists, neuromuscular specialists, dermatologists, rehabilitation specialists, pulmonologists, and others. This will be very helpful for our members and for new patients.
Your input will make a difference! It only takes a minute or two.
As a part of Rare Disease Day 2018, we held two live, online video education sessions.
The first was with Dr. Victoria Werth, MD, “Overview and new developments in Dermatomyositis.” We thank Corbus Pharmaceuticals for helping to plan this Rare Disease Day session.
The second session, “IV and SubQ IG for Myositis,” was with Vicky Starr, RN, IgCN, and also includes some practical and insurance tips for patients on IG therapy.
See our Rare Disease Day page to watch these educational and informative videos.
As part of our lofty goals, and based on the needs of those living with myositis, we are happy to announce that planning is in place to develop a full-featured smartphone application for iOS and Android!
This ambitious, yet expensive, project will include many features helpful for patients, caregivers, physicians, and other healthcare providers.
We plan to announce the full objectives for this app in mid-to-late 2018.