PETALING JAYA: An alliance of individuals and organisations advocating for patients of Spinal Muscular Atrophy has made a wish-list, appealing to health and related authorities to give more focus and rush much-needed medicines to those suffering from the disease.
In a statement, the group said, “At least one child is born with SMA every two weeks in Malaysia and about 640,000 Malaysians are carriers but do not know they are.” The group said that society usually avoided families with rare diseases because of how it made the patient appear or behave, and because it is inborn and caused by the family’s genes.
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