About Genes-at-Taiwan

With the effort of Taiwan Foundation for Rare Disorders (TFRD), rare disease has been well recognized to public. However, because of the complexity of the disease phenotype with various disease entities and low incidence, the information about rare disease is limited. Patients and their families often felt panic at time of diagnosis was informed and need medical experts to provide related information. In order to make those information available to public and health providers, since2005, we launched a website named “Genes-at-Taiwan”in collaboration with Department of Medical Genetics and Pediatrics, National Taiwan University Hospital.

Genes-at-Taiwan, which is prepared with the assistance of medical geneticists, is a straight forward and easily understandable educational website for rare diseases in Chinese. It translates and promotes the latest educational materials on genetic diseases with precision, diversity, yet limited the use of medical jargons. It also contains the articles for rare inherited diseases, the genetic testing information, news about rare diseases and introduction about technologies for genetic testing, as well as an online counseling service.

This website aims to improve the quality of care for the families with rare inherited diseases by provided related information about disease introduction, genetic testing, and relevant news. In addition, we also wishes to assist the healthcare providers and genetic counselling services in the prevention and treatment of rare inherited diseases in Taiwan.