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让科技为患者家庭点燃希望 梁萌萌代表:打造罕见病关爱“苏州样板”
Su Zhou Ri Bao· 2026-01-25 00:58
Core Viewpoint - The focus is on improving the quality of life for children with Duchenne Muscular Dystrophy (DMD) and ensuring comprehensive support for affected families through policy enhancements and healthcare system improvements [1][2] Group 1: Policy and Healthcare Initiatives - The Jiangsu province has officially included progressive muscular dystrophy in the medical insurance outpatient special disease coverage, marking a significant step in patient support [1] - A proposal has been submitted to create a comprehensive "screening, diagnosis, treatment, rehabilitation, and insurance" system for DMD, aiming to enhance the support framework for rare diseases [2] Group 2: Challenges and Recommendations - Despite existing policies, the implementation of innovative therapies remains challenging, particularly for older patients transitioning into adulthood, leading to gaps in rehabilitation support [2] - Recommendations include early screening for newborns, expediting policy implementation, and extending rehabilitation support to adult patients to ensure equitable access to care [2]