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continues to advocate and lobby for services in diverse ways. In 2016, TFRD lobbied
for amending sub-laws of “Rare Diseases Prevention and Orphan Drug Act,” provided
suggestions, and paid close attention to the issues that are related to patients’ rights,
including NHI, CRPD, rights of disabled persons, and long-term care. TFRD has been

advocating through many different ways and media to gain attention and recognition
from the general public. TFRD also produced shows on TV, for example, CTS News
Magazine-- Seeing the Rare Vitality, and Philharmonic Radio Taipei On Air – Firefly

Story Island. TFRD also invited baseball players, Hong-Chih Kuo, Chuang-hsun Tu, Yu-
Chen Liu, and actress Vivian Sung as our public ambassadors.

In order to advance and support researches and publications in rare diseases, TFRD
funds research project, provides scholarship for graduate students, publishes publicity,

and runs official website. TFRD had participated and attended international conferences
for rare disorders to share experiences with other countries, including Indonesia,
Vietnam, China, Malaysia, and Hong Kong in 2016. TFRD was invited by the NGO

Committee for Rare Diseases (United Nations, New York) to give a Keynote speech at
the inaugurating. Unfortunately, TFRD was not able to join the event due to political
conflicts internationally, but our effort for rare disorders had been seen by the world.

Looking back to 2016, TFRD invites you to stay and move forward with us to assist rare

disorders to enjoy life in 2017.

２０１６年會務暨成果報告

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