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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


Taiwan Foundation for Rare Disorders


Address

6F., No.20, Changchun Rd.
Taipei City, 104 Taiwan

Phone

225210717

Fax

225673560

800 Number

225673560

Email Address

tfrd@tfrd.org.tw

Description

The Taiwan Foundation for Rare Disorders was founded to provide support for rare disorder patients, who are the minority among minorities of Taiwan society. They need the support of the government and the general public in order to protect and enhance their rights. Their quality of life will be improved through encouraging medical research and establishing formal procedures in the referral, diagnosis, treatment and care of rare disorder patients. Most of the rare disorder patients known to date in Taiwan have hereditary metabolic problems. Due to the lack of medications and diagnostic equipment, the patients may not receive early and timely diagnosis, depriving them of their chance of survival, or causing impairments to major organs, which may further lead to serious complications or even death. Those who are fortunate enough to survive are struggling because either they cannot afford life-sustaining medications or such medications are not imported. There is no formal channel to obtain medications and special diets in Taiwan.

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