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2nd Rare Disease Asia Conference 2016

17 November 2016

 

 

Efforts to manage rare disease across Asia will be consolidated and promulgated at the inaugural 2nd Rare Disease Asia Conference. Organised by the Rainbow Across Borders, the conference will be held at Hotel Pullman, Bangsar – Kuala Lumpur from 17-19 November.

Themed Working in One Voice, the conference will bring together almost 400 multistakeholders from the rare disease community which includes patients, their families, specialist physicians and therapists, patient support groups as well as officials from United States, Australia, Japan, Korea, Taiwan, Hong Kong, Thailand, Malaysia, the Philippines, Indonesia, Vietnam and Singapore.
A rare disease is any disease that affects a small percentage of the population. Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear. There are approximately 7,000 Rare Diseases. These disorders can range in frequency from 1:5,000 to 1:1,000,000 to those with only a single individual being diagnosed worldwide.

Because of their rarity, most of these disorders tend to remain well out of the spot. The general public seldom hears them of. Research and funding is often limited. Support groups are sparse. For these reasons, the rare disease conference is significant in that it will, for the first time, bring together the multi-stakeholders for one week of pre-conference workshops and two days of conference, allowing them to form alliances, exchange best practices and also to serve as a platform for future collaborations.

It is our hope that with the conference this year, we will look at making Rare Diseases an Asian Health Priority through understanding the needs of the patients and their caregivers in their journey to integrate back into the community. The conference will work towards a bridging the various stakeholders together to provide for effective and efficient methods of managing and caring for rare disease patients.

This year, Dr Tarun Weeramanthri, Chief Health Officer of Western Australia will be sharing with the delegates on “Making Rare Disease an Asian Health Priority” gearing the attendees towards understanding the individual, national and regional issues challenging rare disease patients and their caregivers.

 

 


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