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28 names are included on the Princess Alexandra aHUS patient register – is one of them yours? September 8, 2014

Associate Professor David Mudge, Associate Consultant Nephrologist, Princess Alexandra Hospital, Brisbane, oversees the national aHUS Patient Register. His registry has 28 Australians recorded to be living with aHUS. Four of these patients reside in Western Australia, six in Victoria, one in New South Wales and 17 in Queensland. The major skew...

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Sarah’s story – “breathing borrowed air” – August 21, 2014

Medical receptionist, Sarah, 28, Cairns, has lived her entire life with Cystic Fibrosis (CF). With only 24 per cent lung function, she has spent a lifetime “breathing borrowed air.” That was until September, 2013 when Sarah flew to the Prince Charles Hospital, Brisbane to receive a double lung transplant. Post-transplant,...

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Mr Stephen Jones MP lends his support to aPSGA cause – July 17, 2014

The aPSGA treasurer, Debbie Basham, met with Shadow Assistant Minister for Health, Mr Stephen Jones MP today to discuss the plight of the small number of Australians living with the life-threatening blood disease, atypical Haemolytic Uraemic Syndrome (aHUS). Mr Jones immediately accepted a meeting with Debbie following a letter sent...

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#saveaHUSlives – July 17, 2014

Thank you to all of you who have helped support our #saveaHUSlives campaign by posting your picture online. Approved for the treatment of aHUS by the Therapeutic Goods Administration (TGA) in October 2012, Soliris, the only clinically proven life saving treatment for aHUS, in cost terms is out of reach...

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Soliris helping UFC fighter to clinch victory – July 8, 2014

In October, 2009, American mixed martial arts fighter, Joe Ellenberger, then 24, was diagnosed with the ultra-rare blood disorder Paroxysmal Noctournal Haemogloburina (PNH). Before his diagnosis, Ellenberger, now 29 was a 10-0 fighter in the amateur professional league and was on his way to competing in the Ultimate Fighting Championship...

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Isabelle’s Story – July 1, 2014

A determined young woman who recently completed her first year of a biomedical science degree with high distinction through Swinburne University of Technology, Melbourne, Isabelle, 19, was working had to achieve her goals. On December 21, 2013 this scenario changed when Isabelle was admitted to hospital with symptoms her father...

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