Experience of pain and fatigue in adult idiopathic inflammatory myopathies (IIM)
Learn more about the different types of the idiopathic inflammatory myopathies (IIM), generally referred to as myositis, rare systemic autoimmune muscle diseases.
Learn more about patient-centered programs we offer including support, education, financial assistance, clinical trial matching, advocacy and access to research.
Check out educational myositis videos. Both patient- and -expert led sessions will help you better understand your rare disease and learn more about opportunies for patients.
Although we serve all patients and caregiers with myositis, inclusion body myositis is different from the other inflammatory myopathies.
Upcoming Video Support Sessions
Mark your calendar to join for the following sessions. Registration is not available for video support sessions. Join on the date and time listed. View the individual events for full details and join links.
- September 21 @ 2:00 pm - 3:30 pm EDT
- September 27 @ 5:00 pm - 6:30 pm EDT
- October 2 @ 7:00 pm - 8:30 pm EDT
- October 19 @ 2:00 pm - 3:30 pm EDT
- October 25 @ 5:00 pm - 6:30 pm EDT
Share your #MyositisLIFE experiences
We need to hear your voices! Share your experiences with myositis on our new patient and caregiver website, #MyositisLIFE. Share your topic-based experience as a story, photo, short video, or meme.
Emily A. Filmore shares “My Vampire Life” her story of life in the dark because of photosensitivy to sunlight and indoor lights. Read the full article here.
We love and appreciate our myositis caregivers and care partners.
We have put together tips and resources we believe will help you as a member of your loved one’s healthcare team.
We have partnered with Antidote Technologies to make clinical trial matching faster, more refined through the search tool, and by providing you will all of the information you need to make a decision to participate in a clinical trial. And, the trial information is easy to read, adding a huge benefit.