aHUS news

A shift in medicine – why pharmaceutical companies are vying for the next blockbuster therapy – The Conversation – October 24, 2016

In recent years, there has been a shift in the focus of pharmaceutical companies, with the trend now focusing on discovering the next US$1billion “Blockbuster” medicine treatment for a rare disease state. In a new research piece published by online medical news site, The Conversation, researchers have identified that one of...

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Victorian girl granted rapid access to life-saving aHUS treatment: now set to lose access post- 1 year of treatment – September 8, 2016

Bubbly nine year old Chelsea from Rosebud, Victoria was a picture of health until falling ill during a family trip to Bali in August to September, 2015. After returning home, Chelsea’s mum, Mandy, 46, watched helplessly as her daughter’s health continued to decline. Concerned for her daughter’s welfare, she took...

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Sussan Ley retains Health portfolio under Turnbull government – July 21, 2016

Despite well-publicised fears that she may be made the scapegoat for Labor’s “Medi-scare” campaign, Federal Health Minister, The Hon. Sussan Ley MP, has retained her health portfolio following the re-election of Malcolm Turnbull as Prime Minister. Announcing his new Cabinet earlier this week (July 18, 2016), Prime Minister Turnbull said, “I...

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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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