Upcoming Events
Myositis Caregiver Video Support Session, March
March 26 @ 8:00 pm - 9:30 pm EDTIBM Patient Video Support Session, March 2019
March 29 @ 4:00 pm - 5:30 pm EDTMyositis Patient Video Support Session, April 10, 2019
April 10 @ 7:00 pm - 8:30 pm EDTMyositis Patient Video Support Session, April 20, 2019
April 20 @ 2:00 pm - 3:30 pm EDTMyositis Caregiver Video Support Session, April
April 23 @ 8:00 pm - 9:30 pm EDT
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
The ongoing Arimoclomol Clinical Trial for sIBM continues to generate a lot of questions from our community. As part of our commitment to providing the latest information on research and clinical trials, we asked Dr. Mazen Dimachkie, Principal Investigator for the Phase II/III Arimoclomol Studies and Professor of Neurology and Director of the Neuromuscular Division at University of Kansas Medical Center, if he would provide us with an update.
This paper assesses the performance of EULAR/ACR classification criteria in a cohort of IIM cases and examines how subtypes of IIM identified by the criteria compares to expert opinion. Based on the results, the EULAR/ACR criteria were highly accurate in identifying cases of IIM.
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!
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.
