The urgent need to empower rare disease organizations in China: an interview-based study.

ABSTRACT:

Background

Each rare disease only affects a small number of population. However, a total of 7000 rare diseases may affect 10% of the population. Due to the severity and lack of rare disease awareness, rare disease represents a huge challenge for the healthcare system. In Western countries, patient organizations have been playing an integral role in raising awareness, advocating legislation, and supporting drug development. This study aims to assess the unmet needs of rare disease patient organizations in China, and identify their unmet needs, providing essential information for the government and legislators.

Results

A total of 28 individuals representing 28 patient organizations in China were interviewed. Most organizations do not have official registration, employees, writ

SUBMITTER: Li X 

PROVIDER: S-EPMC7552513 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature