Inaugural Rare Disease Asia Conference 2015 launched to raise awareness of conditions

SINGAPORE - The first Rare Disease Asia Conference 2015 was launched on Thursday morning at the Concorde Hotel Singapore. The event was organised to promote awareness of rare diseases, as well as foster regional ties between countries.

The conference was attended by 25 patient care groups and over 240 participants from 13 countries, including Japan, Vietnam, Australia, and Singapore.

Coordinated by Patient Support Organisation Rainbow Across Borders, the two-day affair is a platform for patients with rare diseases and their family members, as well as medical experts and professionals, to share their experiences and put together practice guidelines.

A rare disease is any disease that affects only a small percentage of the population.

Most rare diseases are genetic, and are present throughout the person's life, even if symptoms do not immediately appear. Because such conditions strike fewer people, many patients have trouble finding support networks or even proper medical attention.

There are thousands of rare diseases, including cystic fibrosis, which affects the respiratory and digestive systems, Huntington's disease, which affects the brain and nervous system, and muscular dystrophies, which damages the muscles.

"We hope to give people across the region a common place to build a common agenda, which is combating the spread of rare diseases," said Mr R. Rajakanth, executive director of Rainbow Across Borders and chairman of the conference organising committee.

"Physical healing comes slowly, but half the battle is won when you have someone with you to help manage the emotional recovery."

samgohwy@sph.com.sg