News Archive


PNHSAA 2013 AGM PNHSAA 2013 AGM_Nominations and Membership

PNH Documentary by Danielle Robertson

Danielle Robertson is in her final year of journalism and for her final project produce this fantastic documentary on PNH which features some of our PNHSAA members and patients along with a few stars from the committee. Please take the time to watch the documentary.

The PNHSAA National Conference 25 February 2012

Sebel Albert Park Hotel in Melbourne on Saturday, 25 February 2012 The PNHSAA held its first national conference at the Sebel Albert Park Hotel in Melbourne on Saturday, 25 February 2012.  The Association had an overwhelming response with 55 PNHSAA members representing VIC, NSW, WA and QLD coming together to meet each other as well […]

Channel 7 news report – Mark’s story

Mark Filmer’s story highlights the benefits of Soliris treatment for PNH patients and the lives we face without it. Mark struggled for years with untreated PNH, putting a strain on his wife and family. Without funding forthcoming, he is set to return to that life once free Soliris supply stops in Australia in May 2011. […]

Channel Nine Morning News Interview

Channel Nine Morning News Interview Channel 9 (National Australia) National Nine Morning News – 20/05/2010 – 11:28 AM Amelia Adams There is growing concern that Australians suffering from a debilitating blood disease that affects only around 70 people in the country, will be effected by the Fed Govt cutting available funding. Host talks to Prof […]

PNH Patients finally given access to life-saving treatment

The Government announced today that PNH patients eligible to receive Soliris (Eculizumab) treatment will have fully subsidised access from 1 January 2011 through the Life Saving Drugs Program (LSDP). Eligibility criteria has been developed by the PNH Disease Advisory Committee, chaired by Professor Jeffrey Szer, Director of Clinical Haematology & Bone Marrow Transplants at Royal […]

Lobbying efforts gain audience with PM

On 16 and 17 November 2010, PNH patients Linda Charlton (President) and Jenny Sturrock (Secretary) met with numerous Senators and MPs across all political parties, including Independent Andrew Wilkie MP at Parliament House. Whitney Lane (click here for profile) accompanied Linda and Jenny at Question Time on Wednesday 17 November, during which the Opposition raised […]

PBAC recommendation to fund Soliris

29 September 2010 The Health Minister announced today that the PBAC has recommended that the Government consider funding Soliris through the Life Saving Drugs Program.  Minister Roxon advised that funding negotiations with Alexion Pharmaceuticals, the manufacturer of Soliris, are underway and a Disease Advisory Committee is being established, to be chaired by Professor Jeffrey Szer, […]

Health Minister’s promise “As soon as I get that advice, this drug will be funded”

During an interview with 4BC Brisbane’s Michael Smith on 17 August 2010, Health Minister Nicola Roxon confirmed that the outcome of the PBAC’s further review of Soliris, requested by her in May 2010, had not yet been provided to her. She noted that the decision whether or not to fund drugs should not be a […]

Northie shares his secret

Prominent Central Coast musician Aaron “Northie” North told his fans for the first time last week about his PNH diagnosis via this YouTube video. Aaron was 18 when diagnosed with PNH two years ago and has continued to manage his demanding career with the dramatic impact of PNH upon his lifestyle.  Aaron has the benefit […]



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