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於2019-10-20 16:02:42發表 (閱讀次數:408)
Serena received International Rare Hero Award -2

Mrs. Serena C. Wu, founder of the Taiwan Foundation for Rare Disorders (TFRD), received the International Rare Hero Award from Rare Disease International (RDI) at the Asian Pacific Alliance of Rare Diseases Organization’s (APARDO) annual summit in 2019.

The 48-year-old said Taiwan’s democracy and the general public’s contribution of time and money have made it possible for an ordinary mother like her and co-founder, Prof. Min-Chieh Tseng, to establish such a foundation in support of people with rare disorders and their families.

The Rare Hero Award belongs to every Taiwanese who supports the cause,” she said.

Dr. Ritu Jain, chair of the APARDO, said that the summit was held in Taiwan as 2019 marked the 20th anniversary of the founding of the TFRD.

More than 50 delegates from 19 member organizations from 17 countries took part in the event, the highest number of attendees at an APARDO summit.

Dr. Jain noted that not every country is willing to share information on rare diseases with the international community.

She once asked why Taiwan was willing to do that. Mrs. Wu answered, “All rare disease patients and their families are our families. We should help each other.”

Dr. Jain was impressed that a group of talented people in Taiwan work together and are willing to dedicate themselves to the cause even though they gain no financial benefits.

Mrs. Wu said the award represents the international recognition of Taiwan’s rare disease efforts, a success she credited to the cooperation between the government and the society.

She said that for example, the government is willing to listen to the voices of these patients and that the national health program allocates special funds for the treatment of rare diseases.

In addition, the news media in Taiwan have helped build a bridge between rare disease families and the general public, allowing people to better understand what it is like to live with a rare disease. 

For twenty years, many people have been donating NT$100 (around US$3.3) on a monthly basis to support the foundation. "A fine example of the goodness of people in Taiwan," said Mrs. Wu.

It may be bad to have a rare disease, but in Taiwan, the whole society is helping,” said Dr. Durhane Wong-Rieger, founder of the APARDO.

She also noted the authorities in the United States, the European countries and Japan have passed laws to protect patients with rare diseases, but that is limited to medical care. Patients still face difficulties outside of hospitals, and the general public have little understanding of rare diseases.

She urged other countries to learn from Taiwan’s experience to solve the problems faced by rare disease patients around the world.

Translated from a United Daily News news report dated Oct. 22, 2019.