• The Health Ministry has been urged to expedite access to a new drug therapy to treat those affected by spinal muscular atrophy (SMA), especially children, said founder of NGO WeCareJourney Yap Sook Yee.

  • Open Letter to PH Government: “Appeal for increased support for rare disease treatment in Budget 2019”

    With Budget 2019, the Government can demonstrate equity by expanding treatment for rare diseases, and fairness and equality by funding SMA orphan drugs. This paves the way for children with SMA to get lifesaving and lifechanging medicines like Spinraza. We also look forward to promising new SMA orphan drugs that are expected to be approved for use in the near future.

  • Do you know? 1 in 50 carry the defective SMA gene.

    SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.

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