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Family hopes for affordable access to spinranza in Malysia
Sook Yee Yap, mom to 8-year-old Brandon, founded We CARE Journey in June 2016 “to champion, C.A.R.E and support families with SMA and disabilities”. She’s also vice-president of the Malaysian Rare Disorders Society and she’s advocating for access to spinranza on behalf of people living with SMA in her country.
Read more here: Australia Adds Spinraza to Subsidized Coverage for SMA Kids, But Malaysia Still Waiting
Do you advocate on behalf of yourself or the SMA community in any way? What causes are important to you? How do you share them with people who don’t live with SMA? Can you relate to Sook Yee’s experience?
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