Blog

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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Alexion Pharmaceuticals purchases Synageva BioPharma Corp – May 12, 2015

In a cash-and-stock deal valued at more than AUD$10.5 billion, Alexion Pharmaceuticals purchased orphan drug biopharma manufacturing company, Synageva BioPharma Corp on Wednesday, May 6, 2015. Synageva is currently awaiting approval from the US Food and Drugs Administration (FDA) and the European Medicines Agency (EMA), of its first orphan treatment....

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On a wing and a prayer: Little Wings charity helping Aussie kids in outlying communities access life-saving, metro-based treatments – April 24, 2015

In an inspiring initiative from New South Wales, a new charity called Little Wings is helping the families of children residing in regional and remote areas of the State battling chronic health conditions, to access much-needed, specialised, city-based treatments. Little Wings works to combat the tyranny of distance and healthcare...

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Debbie’s story – Fighting to access Soliris for all Australians in order to qualify for a kidney transplant – April 23, 2015

July, 2015 will mark 12 years since, Debbie Basham, 53, Cairns, was diagnosed with the ultra-rare, life-threatening disease, aHUS. “Back then, so little was known about the disease, that any information whatsoever on aHUS was extremely difficult to find,” said Debbie, who is also Treasurer of the aHUS Patient Support...

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NSW Liberal Government to fund access to HSDP- listed treatments if re-elected

If re-elected this Saturday, March 28, the NSW Liberal Government has promised to scrap co-payments for public patients requiring access to highly specialised medicines. Currently, patients must pay a $37.70 co-payment for medicines listed under the PBS Section 100: Highly Specialised Drugs Program (HSDP), while concession patients are required to...

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