New Partnership Programs
RDMD for IBM patients
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.
Smartphone App for Myositis
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
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.
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!
Identification of Predictors for Interstitial Lung Disease in Myositis Patients: A Systematic Review
Interstitial lung disease (ILD) is a well-recognized complication in the spectrum of diseases known as the idiopathic inflammatory myopathies (IIM). Individual studies of IIM-associated ILD have shown variation in the progression of the disease and, because of small sample sizes, prognostic factors seem to be difficult to identify. Prognostic factors are those characteristics or conditions that can be used to estimate or predict outcomes of disease.
Introducing the NEW Myositis Support Community! The Myositis Support Community is similar to Facebook, however, it provides a more safe and secure environment for the sensitive topics we discuss as people living with, and those caring for people with, myositis (idiopathic inflammatory myopathies).
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.
Announcing a new Myositis Support Community
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.
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.
