Archives: June 2015

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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