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PETALING JAYA: Once a week since December 2017, Sivasangaran Kumaran will strap his 21-month-old daughter Swathi Nisha Nair in the car seat and make the long drive from Seremban to…
The Pompe Family
Last Thursday, April 4th 2019 I received a shocking news that my 43 days old nephew is having a rare disease. He has undergone many operations due to birth complications…
Taking stock of rare disease
Today, more than 70 countries, including Malaysia, celebrate WRDD on the last day of February to raise awareness among the general public and decision makers about rare diseases and their…
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Spinal muscular atrophy – making hope real for the families
Spinal muscular atrophy (SMA) is a degenerative disease that occurs in about 1 in 11,000 live births which means about one baby is born with SMA almost every week in…
Spotlight on LSD’s costly impact
TO UNDERSTAND her subjects, full-time artist Chiang Sook Siang visited the clinic where they were receiving their doses of enzyme replacement therapy every day for a month. That is why…
