Rare Disease Day 2020

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.