Get the Support you deserve
Patients, Caregivers, and Family Members
We offer the best support to myositis patients, caregivers, and family members. Whether it’s our on-site community, our Facebook support groups, or our live online video support sessions, we are always here for you because we are patients and caregivers too.
Myositis News and Updates
One of our goals is to provide inclusion body myositis patients with access to research. MSU is excited to announce a new, mutually beneficial relationship with Orphazyme, the Danish biopharmaceutical company sponsoring the Arimoclomol Phase II/III clinical trial for sporadic inclusion body myositis.
The recent article in Current Opinion in Rheumatology describes recent advancements in diagnostic and therapeutic approaches to inclusion body myositis (IBM).
In this study, the researchers set out to determine if there was a distinction between the type of autoantibodies present in dermatomyositis patients and the incidents of skin eruptions while taking hydroxychloroquine.
Statins are drugs that lower cholesterol. There have been reports indicating that statin use may be associated with idiopathic inflammatory myopathies, but the authors claim this was the first study to statistically confirm it.
NuMe App for myositis!
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!
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 and Understanding
MSU has been 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.
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.
