In the process of determining whether or not they are afflicted with a genetic illness, rare disease patients often experience anguish from the prolonged waiting and confusion that ensues. The lack of funding in Taiwan for rare disease specimen testing facilities exacerbates this problem. Rare disease patients have had to resort to specialists and research organizations abroad for help. But language barriers, lack of information, and insufficient finances often prevent patients from seeking help abroad and force them to join the waiting list.
To help resolve the predicament of patients and their families, TFRD collaborates with the Department of Health to set up the "International Diagnostic Testing Center" to transfer specimen to overseas 9 contracted testing centers. Since 2001, TFRD has been serving as the only institution that handles
transferring specimens. In terms of expenses, the government pays for 40%, the Foundation pays for 40% (appropriated from the Medical Care Subsidies Fund), and patients pay for 20% of the total amount.
In 2008, TFRD handled 39 cases and subsidized $621,794 NT dollars.
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