Rotary Club Donates for Newborn Screening

Rotary Club Donates NT$1.9 Million for Newborn Screening

The Taiwan Foundation for Rare Disorders (TFRD) has been promoting "Second Generation Newborn Screening Project" since 2000 due to its concerns about how diagnostic difficulties often delay treatment.

The foundation was established in 1999.

Under the project, which can serve as the first line of defense for rare disease prevention, almost 30 diseases can be tested with just one drop of blood.

Although at first, the project faced voices of criticism and skepticism from the government and some academics, the government increased the number of mandatory tests from 5 to 11 in 2006.

Additionally, as the TFRD strongly advocated parents’ right to access all the test results, the Ministry of Health and Welfare conformed to public opinion, allowing parents to have access to the results of those non-mandatory tests if they sign a consent form. The decision has made the rare disease prevention network more robust and complete.

In addition to continually advocating the increase in the number of mandatory newborn screening tests, the TFRD has provided indigenous people and the economically disadvantaged with subsidies for newborn screening tests. The subsidies have accumulated NT$26,183,650 from 2003 to 2016.

However, charitable donations have been decreasing in recent years, making it difficult to continue the subsidies.

Fortunately, President Chang-An Chen, a pharmacist, of the Rotary Club of Taipei Twins, moved by the long-term commitment and dedication of the TFRD to rare disease prevention and treatment, applied to Rotary International for funding and received NT$1.9 million.

 “The international community should learn from the TFRD’s dedication and efforts in promoting newborn screening. The donation is contributed not just by the International Rotary headquarters but also by Rotary Clubs in countries such as Japan and Thailand,” said President Chen.

Echoing the help from Rotary International, the TFRD has officially launched “Newborn Screening for Indigenous and Economically Disadvantaged Families” fundraising project.

“All of us are willing to do something for newborns from indigenous families and economically disadvantaged families. We also hope that the results can apply to Southeast Asian countries, helping other countries develop newborn screening programs,” said Chen.

Translator: Jonathan Wilson (Bruton disease), Reviewer: Alex Chiang