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.
Join us for live Rare Disease Day video sessions
Registration is required for all MSU Rare Disease Day webinars below. Click the event title or image to see the full event details, which also includes the link to register. Our webinars are educational and conversational, providing you the opportunity to ask questions, whether live or via the chat box in the Zoom video software we use. These sessions are recorded.
Register to join Megan and Lauren, occupational therapists, along with Fin Mears PT and Ruben Pagkat...February 25 @ 6:00 pm - 7:00 pm EST
Submit interest in at-home volunteering to enter a chance to win a $500 Visa gift card or MSU T-shir...February 29 @ 3:00 pm - 4:00 pm EST
Register to join “An Introduction to the PRESIDIO Clinical Trial of KZR-616 for the Treatment of Polymyositis and Dermatomyositis”
Register to join Dr. MK Farmer with Kezar Life Sciences on Rare Disease Day 2020 for a live online v...February 29 @ 5:00 pm - 6:00 pm EST
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.