• 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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EVENTS

02 Dec 2018
Desa ParkCity
WeCareJourney is bringing SMALL WHEELATHON II to you and your family & friends, on Sunday 2 Dec 2018, in conjunction to International Day of Person with Disabilities. Come join us!
26 Jan 2018
Kidzania, KL
Are you a family with children with disabilities? Would you like to visit Kidzania KL on Friday 26 Jan 2018 from 9.30am to 1pm?
21 Jan 2018
English Champ, PJ
A sharing session facilitated by Ms Sook Yee, a mother of a child with a life limiting genetic disorder (SMA)
31 Dec 2017
Desa ParkCity
Come join us at “SMAll Wheelathon Charity Ride" ♿🚴🏃🛴🏂 to make a BIG difference.

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