- April 26 @ 4:00 pm - 6:00 pm EDT
- May 7 @ 7:00 pm - 9:00 pm EDT
- May 18 @ 2:00 pm - 4:00 pm EDT
- May 31 @ 4:00 pm - 6:00 pm EDT
- June 28 @ 4:00 pm - 6:00 pm EDT
We will be announcing more about our new #MyositisLIFE program soon and will be asking for photos wearing your myositis shirts.
We have a lot going on in May for Awareness Month and we will be launching this soon. Be sure you are a registered member to get notifications!
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: Video Session is now available.
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!
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.
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?
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.