Liem S L
Ned Tijdschr Tandheelkd. 2008 Nov;115(11):621-3.
Patients with one of the 6,000 rare diseases that are at the present time known to exist, together form a large group. Relevant information, a correct diagnosis and appropriate and adequate therapy are sometimes difficult to obtain for these vulnerable patients. Physicians and researchers are increasingly working in networks to record the findings of research and to make it available by means of databases. Patient organizations provide information and guidelines and are easily accessible for the public via their websites. In this contribution, the websites of, first, Orphanet, a database devoted to information on rare diseases,and, second, the Dutch Steering Committee Orphan Drugs, a portal site with information for patients with a rare disease, will be discussed.
目前已知存在的6000种罕见疾病中的患者共同构成了一个庞大的群体。对于这些弱势群体患者而言，有时很难获得相关信息、做出正确诊断以及获得适当且充分的治疗。医生和研究人员越来越多地通过网络开展工作，以记录研究结果并通过数据库提供这些结果。患者组织提供信息和指南，公众可通过其网站轻松获取。在本论文中，将讨论两个网站，第一个是致力于提供罕见病信息的数据库“孤儿病网”（Orphanet），第二个是为罕见病患者提供信息的门户网站“荷兰孤儿药指导委员会”。
