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. The next World Myositis Day is Saturday, September 21, 2024.
September is an important month for TMA, which has hosted the International Annual Patient Conference annually in September 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
- 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.