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.
After the government took over the “Cooperative Plan of Transferring Specimen Abroad for Genetic Testing” in 2012, TFRD continued to assist patients, specifically those who were suspected to have rare disorders and were not qualified for subsidy, to receive the testing. TFRD had subsidized 455 people, and $5,246,887 NTD from 2001 to 2017.
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