Federal Health Minister pledges aHUS patients will continue to receive government subsidised access to treatment if doctors’ deem medication essential – September 18, 2015

Radio host, Jon Faine, 774 ABC Melbourne interviewed Federal Health Minister, The Hon. Sussan Ley on his program this morning, regarding the government’s plans to continue providing aHUS patients with subsidised access to Soliris, one year post- PBS listing. Referring specifically to aHUS patient, Katherine Marshall, Melbourne, Ms Ley denied...

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Recycling organs: a risky business or savvy strategy for tackling our national shortage of organ donors? September 11, 2015

With around 1,600 Australians on the organ donation waiting list at any given time, a shortage of organ donations across the nation has led doctors at Newcastle’s John Hunter Hospital to transplant willing dialysis patients with the recycled and diseased kidneys of cancer patients. Despite being an extremely risky procedure,...

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PBAC to consider providing access to Soliris for aHUS patients who have received an organ transplant – Wednesday, September 9, 2015

Further to a letter issued by aPSGA President, Kerri Grey to Greg O’Toole from the PBAC on July 30, 2015, the PBAC has today (September 9, 2015) invited Soliris’ manufacturer, Alexion, has received a request for data on prevention of recurrence of TMA manifestations in patients after transplant, for consideration...

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aPSGA goes global – Tuesday, June 30, 2015

aPSGA goes global Australia represented at aHUSUK & aHUS Alliance 2015 meetings On Saturday, June 27, 2015, aPSGA President, Kerri Grey represented the aPSGA at the second annual aHUSUK conference. Held in the Senate House, University of London, the conference was attended by more than 115 aHUS patients, their families,...

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‘Maddie Riewoldt’s Vision’ to raise awareness of Bone Marrow Failure Syndrome (BMFS) – June 15, 2015

In February, 2015, Madeleine Riewoldt, 26, sister to St Kilda (Australian Football League) Captain, Nick Riewoldt, tragically passed away from the rare bone marrow disease, aplastic anaemia, after a gruelling six year battle. Maddies’s story. Bone Marrow Failure Syndrome (BMFS) is a collection of medical conditions in which the bone...

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