Taiwan ERT 20th Anniversary Celebration

Families have joined the TFRD in celebrating the 20th anniversary of the introduction of life-saving Enzyme Replacement Therapy (ERT) into Taiwan, expressing appreciation to those who contributed along the way.

A total of 148 people, including those who helped make the treatment available in Taiwan, as well as 46 families with lysosomal storage disease patients, attended the event on December 16th, 2018.

The event was held in association with the Taiwan Pompe Association, the Taiwan Association of Fabry disease, the Niemann-Pick Patient Association and Sanofi.

ERT was officially introduced into Taiwan in October 1998. Ren-Hao Xiao, a then thirteen-year-old Gaucher's disease patient, was the first to receive the ERT treatment inTaiwan.

He was able to survive with two injections every month. A single injection cost NT$320,000. Mrs.Serena Wu, the founder of TFRD, and members of TFRD’s fundraising committee were doing their utmost to raise the funds.

During the event, Xiao’s mom shared the story of how she managed to take Xiao to Taipei and sought treatment for him.

“In 1998, we gave Ren-Hao the first injection of an orphan drug in Taiwan and it has changed his life. It has also benefited patients with similar conditions,” said Dr. Lin, who was Xiao’s doctor.

Other patients also took the stage to express their gratitude, saying that the treatment allowed them to have more time with their families.

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