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.

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.