Serena received International Rare Hero Award

Ms. Serena Wu, Founder of TFRD, received International Rare Hero Award 

“He must be possessed by ancestors without virtue.” This is a possible innuendo a rare disease patient might face twenty years ago, when rare diseases were regarded insoluble, and patient families were severely discriminated and isolated by the society in Taiwan. The miserable situation remained unchanged until Ms. Serena Wu, who actively linked rare disease patient families, media and social resources to promote legislation and initiation in the society. She established Taiwan Foundation for Rare Disorders on June 6, 1999, and since then did Taiwanese people start to understand rare diseases correctly.  

TFRD would like to congratulate its founder, Ms. Serena, for being awarded International Rare Hero Award by Rare Disease International (RDI). Serena humbly states that the honor goes to all the Taiwanese people who have supported rare diseases for the past twenty years. Without the financial and manpower supports from the public, it would be impossible for Prof. Min-Chieh Tseng and her to set up any shelter for rare disease patients and families. Moreover, the award symbolizes international recognition of Taiwan’s efforts of rare disease protections, including government’s heartfelt understanding and establishment of rare disease earmarked fund in national health insurance system, as well as media’s continued broadcasting of resilient life stories of rare disease patients. These have all represent Taiwan’s civilization and advancement.

“We can’t take care of our children forever, but a well-established system can.” Serena knows very well the limitation of a single person’s capability, and that short-term sympathy cannot ensure long-term protection for rare disease patients. The only solution is to establish a well-designed system. Therefore, she promoted the legislation of “Rare Disease Protection and Orphan Drug Act,” which not only pioneered in Taiwan’s legislative history, but also greatly influenced government’s launching of protection system for rare disease families. The Act has granted patients’ medical subsidies, and also upgraded the meaningful protection and control of rare diseases. The passing of the act, making Taiwan the world’s fifth nation to do so, is indeed a pride of Taiwan.

To successfully establish TFRD to help more rare disease patients like her own son, Terry, Serena says she had to tell true stories to attract journalists’ attention. Many medical journalists would report her story with tears. She appreciated their tolerance of her hours of sharing on phone and prompt publications of touching reports that helped Taiwanese public understand more about rare diseases in a jiffy. On the other hand, Serena also speaks up rationally for rare disease patients in every legislation or initiation occasions by illustrating miserable stories with accurate data and explanations, fighting vigorously for the patients’ rights. In the meantime, Serena also helps establish Taiwan Organization for Disadvantaged Patients and cultivate many patient groups. By calling for patients’ collective initiation and strengthening patients’ emphases on their own medical rights, Serena and TFRD have highlighted the diversity of rare diseases and satisfied individual needs, making TFRD a real sweet home for rare disease patients’ families!

Translator: Annie