2nd ASEAN and Rare Disease Network Meeting

The 2nd ASEAN+ Rare Disease Network Meeting was held from November 30th to December 1st in Singapore, 2017. Nearly 28 representatives from 11 rare disease groups attended. Besides TFRD, Taiwan also has members from the Taiwan Association of Fabry disease joined this event. The organizer, Rainbow Across Borders, is a Singapore organization of rare disease. We expect to establish exchanges and cooperation with rare disease groups in Asia-Pacific region, to strengthen links between groups in this event, and finally make rare diseases an important issue that cannot be ignore in public health field.

The topic of the workshop is “Advocacy for rare disease patient’s right”, and civil groups included Malaysia, Singapore, Thailand, Vietnam, India, Indonesia, Philippines, China, Korea, Hong Kong, and Taiwan. Representatives from various groups share their experience of advocating issues of rare disease. TFRD also invited to make a speech of how Taiwan establish “Expanded Newborn Screening System”.

Many groups are highly praised Taiwan’s policies and services for rare diseases, however, due to different national conditions, there are still many difficulties to overcome if they want to follow Taiwan’s example. Through this interaction we discover that the definition of rare disease is ambiguous in different places; the government and medical units have different recognition on rare disease issues; civil groups work hard but lack of links and the benefits of unified voice; the regions which have multiple races and culture such as Malaysia, Singapore, Indonesia are even more difficult to promote the issue of rare diseases.

This time we can see the development of rare diseases in Asia, and we look forward to jointly promoting this issue together in the future so that rare diseases will be seen by the world.

Translator: Jazz Chen (Wiskott-Aldrich syndrome), Reviewer: Joy Yin