腱鞘巨细胞瘤公益科普画展举办 业界呼吁关注罕见病

Group 1 - The first public art exhibition on tenosynovial giant cell tumor (TGCT) was held in Beijing, showcasing over a hundred artworks created by patients, families, healthcare workers, and artists to raise awareness about this rare disease [1][2] - TGCT, also known as pigmented villonodular synovitis (PVNS), is a benign but locally aggressive tumor that primarily affects individuals aged 20 to 50, with a low incidence rate of 1 in 20,000 [1] - The disease can lead to significant limitations in daily activities, work, and social life due to symptoms such as joint swelling, pain, stiffness, and restricted movement [1] Group 2 - There is a significant gap in societal awareness regarding TGCT, and efforts are being made to use art to illustrate the struggles and pain of patients, emphasizing that this rare tumor is closer to the public than they might think [2] - The treatment and management of rare diseases like TGCT require collaboration among government, medical institutions, enterprises, charitable organizations, and society as a whole [2] - The event aims to expand social participation in the awareness and understanding of rare diseases through innovative contributions from the medical field and community engagement [2]