罕见病腱鞘巨细胞瘤科普画展在京举办，百幅画作让“罕见“被看见

Core Viewpoint - The event "2 in 20,000 Encounters - The First National Public Welfare Science Popularization Art Exhibition on Tenosynovial Giant Cell Tumor (TGCT)" aims to raise awareness about TGCT, a rare disease affecting approximately 60,000 new cases annually in China, highlighting its impact on patients' daily lives and mobility [1][2]. Group 1: Disease Overview - TGCT is a non-malignant, locally aggressive tumor primarily affecting individuals aged 20-50, leading to symptoms such as joint swelling, pain, stiffness, and limited mobility [1][2]. - The disease is often misdiagnosed due to its non-specific symptoms, which can resemble other conditions like ganglion cysts and osteoarthritis, resulting in delayed treatment for many patients [2]. Group 2: Treatment and Clinical Needs - Surgical intervention remains the primary treatment for TGCT, with an overall recurrence rate of approximately 46.8% and a median recurrence time of about 12.9 months [2]. - There is a significant unmet clinical need for safe, effective systemic treatments, especially for patients with diffuse TGCT, who face challenges of recurrence and complications [2]. Group 3: Awareness and Community Involvement - The event aims to mobilize social forces and increase public participation in rare disease awareness, emphasizing the need for collaboration among government, medical institutions, enterprises, charitable organizations, and society to build a sustainable ecosystem for rare disease prevention and treatment in China [3].