Due to the low affliction rate and the small number of people who suffer from rare diseases, those who are affected are marginalized in society.  They encounter obstacles in receiving diagnosis, treatment and education, as well as in finding employment and care.

Conventional prejudices and the lack of information about genetic diseases have contributed to the general belief that genetic disease is tremendously shameful or a form of punishment for wrongful deeds committed in a past life.  These ideas have discouraged many from confronting the reality of their illnesses or from seeking medical help, and has in turn led to endless tragedies.  It is our firm belief that only through legislation, can we protect those who are weak and desperately in need of help.

Rare disease, as its name suggests, are those diseases with very low prevalence and affects only a small number of people. Rare diseases are classified differently in each country. For example, in the U.S. it is considered a rare disease if it affects less than 200,000 people. (prevalent in less than 7.5/10,000) In Japan, if the number of patients total less than 50,000 (prevalent in less than 5/10,000).  In Taiwan, according to the Rare Disease and Orphan Drugs Committee, the standard for rare diseases is if it’s prevalent in less than 1/10,000. 

TFRD had been advocating the adoption of “Rare Disease Control and Orphan Drug Act” since the establishment of the foundation.  Thanks to the support from medical society, academia, and legislators, the act finally became available in 2000.

In 2008, the government has categorized 171 diseases as officially proclaimed rare diseases.  TFRD has been serving patients with 203 rare diseases affecting more than 5,000 people. So far 86 orphan drugs and 40 special nutrients have been approved by the government for treating patients.