In 2001, TMA member Janice Goodell organized the first Myositis Awareness Day in Massachusetts to be recognized annually on September 21. Because one day was just not enough, in 2015 TMA expanded its awareness efforts to include the entire month of May. Nevertheless, myositis advocates worldwide have continued to recognize September 21 as a day to spread awareness of this rare disease.
World Myositis Day was adopted in 2023, building upon TMA’s National Myositis Awareness Day in the US. TMA proudly partners with international patient advocacy organizations to drive myositis awareness on World Myositis Day. World Myositis Day is now observed annually on September 21.
This year, MyoCon 2025: TMA’s Global Myositis Patient Conference culminates on World Myositis Day. We’re thrilled to close out a weekend of learning, connection, and empowerment with a celebration of global awareness for myositis. Join us for special activities including a lively jazz brunch and festive giveaways for all attendees to mark this meaningful occasion. You won’t want to miss our Closing Keynote Speaker Julius Birnbaum, MD, MHS, author of Living Well with Autoimmune Diseases: A Rheumatologist’s Guide to Taking Charge of Your Health.
September is always an important month for us. We have hosted MyoCon: TMA’s Global Myositis Patient Conference in September every year since 1995. On September 25, 2006, the US House of Representatives approved the goals and ideals of a “National Myositis Awareness Day” to be observed on September 21. The proclamation endorsing National Myositis Awareness Day capped a years-long effort by TMA.
In 2015, TMA expanded observance efforts to the month of May. Myositis Awareness Month increases opportunities for raising awareness of the disease. September 21 continues to be observed, and now the recognition of the myositis community is on a worldwide scale!
TMA proudly participates in World Myositis Day alongside the following patient advocacy organizations.
- Cure JM Foundation
- Czech Myositis Working Group
- Deutsche Myositis-Gruppe (German Myositis Group)
- Groupe d’intérêt Myopathies Inflammatoires – AFM Téléthon (France)
- The International Myositis Society (iMyoS)
- Myositis Association of Australia
- Myositis Canada
- Myositis India
- Myositis Support & Understanding
- Myositis UK
- Portuguese League Against Rheumatic Diseases (LPCDR)
- Riksförening för myositsjukdomar (Swedish Myositis Working Group)
- Spierziekten Nederland (Dutch Myositis Working Group)
- Stichting Spierziekte IBM (The Netherlands IBM Foundation)
To add your patient advocacy organization’s name to this list, please contact us.