关键词: font-size:medium, ">罕见病；患者组织；患者社区

Abstract: Objective： Explore the operation of the National Organization for Rare Disorders (NORD) and the key points of its work. Methods： Through the work contents and information published on the NORD website and related literature， research on the characteristics of its work. Results： NORD does a lot of work in voicing the needs of patients with rare diseases， promoting legislation， accelerating drug development， strengthening communication and cooperation， and providing services to patients and their families. Conclusion： The US NORD represents the interests of patients， connects patients to patient organizations and other stakeholders， to give more attention， understanding， care and help to patients with rare diseases， and to take the lead in promoting the development of rare diseases. The working mode and experience of NORD are worthy of learning by the organizations of rare diseases in China.
   

Key words: font-size:medium, ">Rare disease； Patients organization； Patients community