Archives: June 2014

QLD Senator pleads with Alexion to make Soliris urgently and freely available to those patients in dire need – June 30, 2014

Speaking in the Senate last week, Queensland Senator, Senator Barry O’ Sullivan, made a personal plea to the US-based CEO of Alexion to make Soliris immediately available to Australian aHUS patients whose lives are at imminent risk. Senator O’Sullivan called into question the total turnover profit made by Alexion and...

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First-in-class face recognition software to help identify rare genetic conditions: Oxford University research – June 27, 2014

Oxford University researchers announced this week that they have created a first-in-class face recognition software tool that could help diagnose rare genetic conditions and even give hints about ultra-rare, genetic disorders. Employing photographic technology similar to that used by Google and Facebook, researchers are able to use the new program...

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Stakeholder meeting update – June 25, 2014

Pharmaceutical Benefits Scheme listing of eculizumab (Soliris) for atypical haemolytic uraemic syndrome A stakeholder meeting was held yesterday (June 24, 2014) to discuss the Pharmaceutical Benefits Scheme (PBS) listing of eculizumab (Soliris) for the treatment of atypical haemolytic uraemic syndrome (aHUS). All invited stakeholders participated, including members of the Pharmaceutical...

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aPSGA meeting with Government to appeal for the lives of all Australians living with aHUS – June 24, 2014

The President and Treasurer of our aHUS Patient Support Group of Australia (aPSGA) are meeting with Department of Health officials today (June 25, 2014) to discuss government funding for the only proven, life-saving treatment available for our small group of members living with aHUS. Meanwhile, the lives of our members’...

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Alexion written to the aPSGA – June 11, 2014

Alexion Australasia has written to the aPSGA today providing patients with an update on access to Soliris. We have distributed a copy of this letter to all members of the aPSGA. Should you have not received a copy please email info@ahusaustralia.org.au.

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‘Bitter sweet sorrow: lives of two young Aussies entrapped in government bureaucracy’ – June 10, 2014

Media release                                                                                                                                      TUESDAY JUNE 10, 2014 Bitter sweet sorrow: lives of two young Aussies entrapped in government bureaucracy Australians battling an ultra-rare blood disease that kills 10 per cent of patients within the first...

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Patient Pressure Builds on PBAC – May 28, 2014

As the July meeting of PBAC draws near, patient groups are again pressuring the government to fund expensive life-saving medicines such as Vertex’s Kalydeco (ivacaftor) for cystic fibrosis. This morning, Cystic Fibrosis Australia, together with 60 people from the cystic fibrosis community gathered at Parliament House demanding that the more...

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