September 14, 2012

International Patient Group Exchange – 10th Annual LSD Conference – Nov 2007

This event was held on 10th November 2007 in KLCC and is sponsored by Genzyme.

The objective of the event was to exchange experiences, success and challenges in establishing own rare disorders society.

The event was attended by representatives from rare disorders support groups in Asia Pacific such as Taiwan, South Korea, Hong Kong, Singapore and Malaysia.

Venue : Traders Hotel, Kuala Lumpur

Organiser : Genzyme and Malaysia Metabolic Society

The participants were from Korean Organization for Rare Diseases (KORD), Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group Taiwan Foundation for Rare Disorders, Singapore Rare Disorder Society, Malaysia Rare Disorders Society (MRDS) and Malaysia Metabolic Society.

KORD has 61 patient groups under them with 33,000 members and runs a care centre providing physical therapy, children activities and other patient support services to their members.

Taiwan has legislated an Orphan Drugs Act where patients with rare diseases can apply for subsidized treatment, drugs and nutritional supplements.

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