Research on the Rare Disease Protection Mechanism in the US.and Its Enlightenment for China
Li Kaiyuan
Chen Feifei
Zhang Senwei
Zhang Luying
Abstract：The US.is the first country to establish a systematic and comprehensive rare disease protection mechanism to provide protection for patients with rare diseases.Based on the perspective of the whole process,it systematically comprehends the rare disease protection mechanism and its operation from five aspects:rare disease legislation,therapy R&D and marketing support,screening and treatment,medical insurance reimbursement,patient registration and information sharing,so as to provide useful references for China to improve the protection mechanism for rare diseases.
Keywords：rare diseaseprotection mechanismUS.
Publication Date：2025-01-04
Online Publishing Date：2025-08-15(First online date of this platform, not the publication date of the document)
Pages：4( 89-92 )