SMH - Sasha has a disease so rare, it doesn’t have a name.

Our little pioneer! Sasha has no idea that she is about to change the future of gene therapy and help millions of people around the world with rare diseases. Life is better lived when helping others and through our fight to save Sasha’s future this is happening.

https://www.smh.com.au/national/nsw/sasha-has-a-disease-so-rare-it-doesn-t-have-a-name-20240308-p5favp.html

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Sydney Morning Herald helps Sasha

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Sydney family seek treatment for daughter with ultrarare disease