Entries by Sue

PBAC to Consider Pegasys® on the PBS for MPN

PBAC will consider PEGASYS submissions at their meeting on 8th March 2017 Submissions to PBAC in support of having PEGASYS listed on the PBS for MPN have now closed. The MPN Alliance Australia would like to thank the MPN community for their submissions. In addition, we would like to thank the Leukaemia Foundation, as well […]

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Alan Mead – Obituary

The MPN AA notes, with regret, the passing of MF-champion Alan Mead on 6th February 2017. Alan was an MPN sufferer. He was inspirational in championing the cause to raise awareness of Myelofibrosis in Australia. He set up a website in 2010 and provided a point of contact for many people suffering from MF. Our […]

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MPN AA Update

On Monday 8 August 2016, members of the MPN AA attended a meeting with other advocates and stakeholders within the MPN Community, hosted by the Leukaemia Foundation of Australia in Brisbane. The meeting was chaired by Bill Petch, LFA CEO, assisted by Anna Williamson, Head of Research and Advocacy, Anthony Steele, Head of Blood Cancer […]

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Rare Diseases Day – Victoria

On Rare Diseases Day, 29th February 2016, 13 people with MPNs gathered in Melbourne’s CBD for lunch at the Chestnut Exchange Cafe on Little Collins Street. A wonderful day was had by all as participants chatted from late morning, enjoyed lunch together and some stayed until well into the afternoon, as time permitted. It was […]

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Rare Diseases Day – Queensland

On Rare Diseases day, 29 February 2016, a group of Queensland MPN patients met for lunch at Toscani’s Garden City to raise awareness for Rare Diseases Day, where ET, PV & MF were all represented. It was an animated gathering, leaving little time to eat lunch between sharing stories and experiences. For one ET patient, […]

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MPN Advocacy and Education International

We are excited that the latest MPN Advocacy and Education International newsletter has a distinctly Australian feel, featuring two patient stories of MPNAA members. One story is about Brisbane-based Lara Chapman and the second story is about Melbourne-based Ken Young. Here is the link If you are not a subscriber to The MPN Advocacy and Education International […]

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