Asia Rare Disease Conference in Singapore

The Asia Rare Disease Conference hosted by Rainbow Across Borders (RAB) took place in Singapore on March 12-13, 2015. There were 25 rare disease groups and 273 specialists and patients from 13 countries attended this event. The members of Taiwan delegation were from TFRD, Taiwan MPS Society and Taiwan Association of Fabry disease.

RAB was the first rare disease union in Asia Pacific region. The conference aimed to increase the attention of rare disease issue. The participants were from China, Japan Taiwan, Indonesia, Canada, Malaysia, Thailand, Vietnam, Philippines, Singapore, Australia, and Korea, etc.

In the opening session, Professor Tarun Weeramanthri, the west Australia government official was invited to share the experiences.  West Australia  listed rare diseases as an important public health issue for 20 years (past two decades). The development stage was worth learning from many emerging countries in Southeast Asia.,

The speakers were two representatives from Taiwan. Dr. Shuan-Pei Lin, the head of Division of Pediatric Genetics at MacKay Memorial Hospital, and Ms. Ruth Kuan-Ju Chen, Executive Director of TFRD.

Dr. Lin talked about the medical care system in Taiwan, which was the pioneer of other countries among Asia, including newborn screening, genetic testing and drug treatments etc.

Ruth, on the other hand, shared Taiwan’s rare disease policy. Patients were well protected by comprehensive institutional regulations such as National Health Insurance Act, Prevention of Rare Disease and Orphan Drug Act and People with Disabilities Rights Protection Act, etc. However, Taiwan still faced the problems of importing expensive medicine and health insurance coverage. Ruth also encouraged the participants to stick together.

TFRD would constantly participate in international conferences. Through these precious international experiences, TFRD hoped to bring more creative services and build a better social institution for patients in Taiwan.

Translator: Ellen Kuo (OI), Reviewer: Joy Yin