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Need for rare disease policy
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…
Health Ministry urged to approve drug to help patients with spinal muscular atrophy
The Health Ministry should approve a drug named Spinraza that can help people with spinal muscular atrophy (SMA), said WeCare Journey co-founder Yap Sook Yee. “On December 23, 2016, the…
William Syndrome: All Q&A Answered (Malaysia)
Many asked about April. The elder she get, her slow development is more prominent to the public. William Syndrome is still a stranger to many. Here I am answering some…
Scaling Mount Kinabalu to raise awareness about rare diseases
A father’s love for his ill baby has pushed him to get out of his comfort zone as he strives to create awareness on rare diseases in Malaysia. Sivasangaran Kumaran,…
Tulang rapuh bukan halangan
PADA satu majlis yang dihadiri baru-baru ini, mata terpandang pada satu susuk tubuh kecil yang duduk di atas kerusi roda. Sekali imbas, nampak seperti seorang kanak-kanak tetapi apabila diperhati lama…
Tulang rapuh hati waja
PETALING JAYA: “Penyakit dialami menyebabkan saya tidak dapat bergiat aktif dalam sukan ketika di sekolah walaupun ada keinginan untuk mencuba seperti individu lain. “Namun, saya tidak berputus asa dan mencari…
