Myositis, the general term used to refer to the idiopathic inflammatory myopathies, is a group of rare, incurable autoimmune diseases that lack FDA approved therapies. Myositis spans many specialties and utilizes various off-label medications and therapies, but it is often challenging to coordinate and afford the necessary care and services patients require.
Like with other rare diseases, myositis patients and caregivers need an organization that caters directly to their needs. MSU, founded by myositis patients in 2015, was created to fulfill a need for more patient-centered programs and services and plays an essential role in the myositis community by offering a “Simply Put” education series, various support options, empowering patient opportunities, financial assistance, and access to research, clinical trials, and resources.
Rare Disease Day is an opportunity for us to work together in the rare disease community to focus on patient-led research initiatives and expanding educational support for patients and caregivers.
Rare Disease Day video sessions
Our Rare Disease Day, and Week, video sessions will be available towards the end of the first week of March. If you are a registered member of MSU, you will receive an email with the video when it is published. We thank all who attended live and we thank our guest speakers and sponsors, Plasma Sevices Group and Kezar Life Sciences.
Upcoming video support sessions
Sew and no-sew fabric masks - Join MSU, led by Emily Filmore, for a video session to make masks toge...April 10 @ 2:00 pm - 3:30 pm EDT
Myositis patients, join us for real-time video support, the first Wednesday of each month at 7 PM Ea...April 18 @ 3:00 pm - 4:30 pm EDT
Create an online myositis fundraiser
Facebook fundraisers are a great way to raise money for patient-centered nonprofits like MSU. They are easy to setup and share, and Facebook covers all fees.
If Facebook isn’t for you, create a fundraising page with MSU directly using the Give Lively platform. Invite friends to join your team, set a goal, and share often. Get started below.
Would you like to make a donation?
Any amount you can donate is helpful, no matter if it’s $5 or $2500. Your donation goes further in helping myositis patients and caregivers since MSU is an all-volunteer nonprofit organization. We appreciate your generous support.