Global Genes Rare Disease Registry

Global Genes Rare Disease Registry是一个专注于罕见病患者的注册数据库，由Global Genes组织运营。该数据库旨在收集和分享罕见病患者信息，为研究人员、医疗专业人士和患者家庭提供资源和支持。作为一个会员制的全球社区，它连接了非营利组织和支持团体，致力于改善罕见病患者的生活质量。Global Genes Rare Disease Registry is a registry database dedicated to rare disease patients, operated by the Global Genes organization. It aims to collect and disseminate information about rare disease patients, providing resources and support to researchers, medical professionals and patient families. As a membership-based global community, it connects nonprofit organizations and support groups, and is committed to improving the quality of life for rare disease patients.