Taiwan Pompe Association Officially Established

Taiwan Pompe Association Officially Established After a Long Wait

Since the establishment of the Pompe Disease patients’ union in 2012, patients' families have always hoped that an "association" can be established to provide more complete services to patients with full-time staff. After more than one year of planning, "Taiwan Pompe Association" was finally established on January 17, 2016. On that day, the Pompe family from all over Taiwan gathered in Taipei, and a total of 68 people from 22 families witnessed the establishment of the association. In addition, doctors who have been committed to caring for patients for a long time also came to join the event.

At the inaugural meeting of Taiwan Pompe Association, people together reviewed the growth of patients and the thriving of the union through videos. Mrs. Serena C. Wu, the founder of TFRD, also expressed her blessing and donated the incubation fund to Taiwan Pompe Association on behalf of TFRD. After that, Dr. Wuh-Liang Hwu from National Taiwan University and Dr. Dau-Ming Niu from Taipei Veterans General Hospital, who have been assisting with rare disease patients for a long time, respectively extended their best wishes to the establishment of the association.

After the inaugural meeting ended, the 1st general assembly began. Constitution and work plan for the coming year were formulated; in the meantime, 9 directors and 3 supervisors of the first term were elected.

Translator: William Luo (MPS), Reviewer: Linda Tsai