Archives: July 2014

#saveaHUSlives campaign – July 31, 2014

In an ongoing bid to have our collective voice heard, we’ve created a video highlighting the community’s generous support for our #saveaHUSlives campaign. While small in number, our collective voice is loud. Our video features an array of individuals who have so generously lent their image and voice...

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aPSGA President Kerri Grey to meet with Shadow Minister for Health, The Hon. Catherine King MP in August – July 28, 2014

aPSGA President, Kerri Grey, will on Thursday, August 12, 2014, meet with Shadow Minister for Health, The Hon. Catherine King MP to continue the aPSGA’s plea to #saveaHUSlives, and outline the plight of the small number of Australians living with the ultra-rare, life-threatening blood disease who require fair, safe, equitable and immediate access to...

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Health Minister Peter Dutton removes comments from parents of sick kids from his Facebook site – July 26, 2014

As reported by Sue Dunlevy, National Health Reporter, News Corp Australia. HEALTH Minister Peter Dutton has enraged parents of sick children by removing their posts from his Facebook account and accusing them of working for a drug company. The parents are pleading for a subsidy for a breakthrough $300,000 per person per year medication...

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Thank you for supporting #saveaHUSlives – July 18, 2014

“aHUS patients should be allowed same access of care as any other patients, no matter the cost – that shouldn’t be a factor – Soliris is a treatment for the living” – aPSGA member, Tracey Young, 34, Roma QLD, living with aHUS. The #saveaHUSlives campaign has started to spread virally...

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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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