Zhangjiagang's "Closed-Loop Care for Rare Disease Families" mechanism stood out as the only government initiative presented at the 13th China Rare Disease Summit, held in Shanghai from Sept 6-8.
This year, Zhangjiagang has been conducting surveys of families affected by motor neuron diseases, offering personalized assistance to 24 patients facing mobility challenges and medication needs. The city is also working on a comprehensive support system for rare disease patients, featuring services such as medication appointments and home care to ensure continuous medication supply and maintain the quality of life of such patients.
Staff from the local community conduct a survey with a patient suffering from motor neuron disease to understand her needs. [Photo/WeChat account: zhangjiagangfabu365]
By prioritizing medication supply, family care, and psychological support, Zhangjiagang has developed a comprehensive support system. This system not only fosters a three-tier collaboration among city, town, and village levels but also seamlessly integrates medical treatment, health insurance, and pharmaceutical services, effectively providing comprehensive support for rare disease patients.
The China Rare Disease Summit, which is the earliest and largest comprehensive academic forum in China dedicated to rare diseases, has been held for 12 consecutive years. It aims to raise public awareness of rare diseases and promote the launch of innovative measures to support patients with these conditions.