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.
Rare Disease Day and Rare Disease Week on Capitol Hill
MSU is on the road for the first time this year to attend Rare Disease Week on Capitol Hill February 24th- February 28th hosted by Rare Disease Legislative Advocates (RDLA). This is part of our commitment to you to reach out and join other advocacy groups to help influence our legislature and “empower the myositis community.”
Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.
Jerry Williams, President MSU, and Lynn Wilson, Vice President MSU, will be providing you with near-daily video updates of the week’s events via Facebook and Facebook Live, but we would love to have you join us at the conference and be part of this powerful experience. You can register to attend the RDLA events for free at https://rareadvocates.org/rdw/.
Featured Myositis News and Updates
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).
We are excited to announce a new collaboration with RDMD, a company that aims to jumpstart research for patients with Inclusion Body Myositis. Learn more about RDMD and how you can get involved as a person living with IBM.
Join MSU in celebrating Rare Disease Day, Feb. 28th, and Rare Disease Week on Capitol Hill. We are also hosting a clinical trial education session in partnership with Antidote Technologies on Feb. 27th.
Smartphone 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 is 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.
