Brazilian Rare Disease Portal

The Brazilian Online Atlas of Rare Diseases service from the National Network of Rare Diseases. This portal was developed to disseminate information from the nationally representative survey about the epidemiology, clinical picture, diagnostic and therapeutic resources used and costs with rare diseases of genetic and non-genetic origin in Brazil, in addition to other relevant information and knowledge involving the domain of rare diseases. Although the database was collected in Portuguese, there is a translation of the metadata and supporting documentation in English available and linked from this record (10.5281/zenodo.13643431).巴西国家罕见病网络（National Network of Rare Diseases）运营的巴西罕见病在线图谱服务。该门户网站旨在发布全国代表性调研所得的相关信息，涵盖巴西遗传性与非遗传性罕见病的流行病学特征、临床表现、所用诊断及治疗资源与相关成本，同时囊括罕见病领域其他相关信息与专业知识。尽管该数据库以葡萄牙语采集，但本记录（10.5281/zenodo.13643431）中提供了元数据与支撑文档的英文译本并附带相关链接。

搜集汇总

背景与挑战

背景概述

该数据集是巴西罕见病在线地图集，由巴西全国罕见病网络开发，旨在传播关于巴西遗传性和非遗传性罕见病的流行病学、临床特征、诊断与治疗资源使用情况及成本等全国代表性调查信息。数据集以葡萄牙语收集，但提供了英语的元数据和支持文档翻译。