Acting Chief Medical Officer sentencing aHUS patients to grave based on farcical rationale – December 17, 2015

What are your thoughts on the recent statement issued by the Federal Health Department’s Acting Chief Medical Officer, Dr Tony Hobbs, in response to mother-of-two and aHUS patient, May Ali, Perth, who has called upon the Federal Health Minister to reinstate her access to the lifesaving medication, Soliris (eculizumab)? Click...

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Access to life-saving medication as an infant safeguarded Esme’s life, PERTH – December 15, 2015

Diagnosed with the ultra-rare, life threatening blood disease, atypical haemolytic uraemic syndrome (aHUS) at nine-months of age, Esme, now 6, Perth, was privileged to be granted compassionate access to the only treatment that could ultimately save her life, Soliris (eculizumab) in May 2010, aged one. This is Esme’s story. Travelling...

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Prompt access to life-saving treatment saved little boy’s life, MELBOURNE – December 15, 2015

The youngest of three siblings, Joseph, 3, Melbourne, had led a happy, healthy and active life until being diagnosed with the potentially life-threatening ultra-rare blood disease, atypical haemolytic uraemic syndrome (aHUS) in August, 2015. When his mother Sarah, 41, picked up Joseph from kindy on August 5, 2015, he appeared...

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aPSGA founder & President fighting for her seven year old son’s right to life, MELBOURNE – December 15, 2015

In January, 2009, then six-and-a-half month old Ashley, now seven, became increasingly agitated and unsettled. This uncharacteristic behaviour prompted his mother, Kerri, 37, to seek prompt medical attention. Kerri’s “perfect baby boy” was subsequently diagnosed with anaemia, and she was advised to take him to hospital straight away. It was...

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