The last keynote presentation on the first day of World Orphan Drugs Congress Asia started with Liew Jun Mun, Co-director of Asian Scientific Initiatives, Rare Genomic Institute in Malaysia. He gave a presentation entitled: Bridging the gap between patients and physicians in Asia.
Rare Genomics Asia was established in 2011 to provide awareness towards diagnosis of rare diseases through genomics sequencing. They help families design research program. They are a pioneering paradigm towards patient bottom up research. Patients themselves have the right to access right funding, right scientists and physicians as well as technology. Currently, there are 7000 diagnosed rare diseases but only 3% of these have therapy. However there’s still limited research here in Singapore and Malaysia. In Rare Genomics Institute, scientists employ the use of genome sequencing as the way for diagnosing rare diseases.
“We are bridging the gaps between the patients and the resources they need to find answers”
Diagnosing rare diseases require three of these factors:
With sufficient online funding, decreased cost of whole genome sequencing decreased by a million fold in the last 10 years. With funding and technology, they will be able to collaborate with the right scientists in world class research institutes not only in Singapore and Malaysia but globally.