Donate
Families and researchers are counting on you !

World Myositis Day on September 21

Published at
Le 21 septembre, c'est la journée mondiale des Myosites

September 21, 2024 marks the 2nd World Myositis Day. At last year's World Myositis Congress in Berlin, international associations fighting inflammatory myopathies decided to dedicate the day to raising public awareness and mobilizing resources around these rare diseases. This worldwide initiative aims to better understand and treat myositis by uniting efforts on a global scale.

Myositis: a rare disease with serious consequences

Myositis is an autoimmune inflammatory disease of the muscles. They cause progressive muscle weakness and can have an impact on other organs such as the skin, lungs and heart. There are several forms of myositis, including dermatomyositis, polymyositis and inclusion myositis, each with specific clinical features. Often misdiagnosed and disabling, they deserve better recognition to enable appropriate management.

Read more about advances in research into inflammatory myopathies.

Support and mutual aid with the Inflammatory Myopathies Interest Group

To improve care, speed up research and encourage exchanges between peers, the AFM-Telethon has created Interest Groups, which bring together, within the Association, patients and families concerned by the same disease. The interest group supports patients and families affected by inflammatory myopathies (myositis) and encourages mutual aid. Led by “experts with experience” who are also affected by the disease, it is a place where patients can be heard. It also provides regular medical and scientific information and prevention advice specific to myositis.

Joining the AFM-Telethon's interest group also means benefiting from the links it has created with doctors and researchers in France and abroad, and being kept informed of current and future clinical trials.

Finally, the group's collaboration with AFM-Telethon's regional services and departmental delegations, as well as the sharing of experiences between those concerned, contribute to improving the lives of patients and family carers.