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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UK media raise concern at aHUS patients accessing Soliris through a “loophole” – June 4, 2015

There has considerable fanfare recently regarding a UK public campaign suggesting aHUS patients are accessing Soliris (eculizumab) through some kind of government “loophole”. The campaign follows a letter penned by 12-year-old Abi Longfellow, who is living with Dense Deposit Disease – a rare condition that stops the kidneys from filtering...

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