Entries by Sue

Queensland Coffee Cake and Chat

The Leukaemia Foundation hosted an informal coffee, cake and chat afternoon at the Jindalee Hotel on Saturday 13th May. It was well attended and provided a useful opportunity for those with an MPN to unwind and connect with others.

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MPN Clinicians and Researchers meeting – Melbourne 27 April 2017

The day prior to the MPNAE&I Patient Program in Melbourne, Australian MPN clinicians and researchers met with some US counterparts to share knowledge and ideas. In the photo below, Dr Ruben Mesa speaks  about the unmet needs of MPN patients, particularly those with Myelofibrosis. He discussed the role of Ruxolitinib, Interferon and clinical trials. He […]

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MPN Patient Program – 28 April 2017

The Australian MPN community was given a wonderful gift on Friday 28 April by Ann Brazeau and her team from MPN Advocacy and Education International, together with Drs Ruben Mesa, Laura Michaelis, and Raajit Rampal from the US; and Drs Cecily Forsyth, Steven Lane, Kate Burbury, David Ross, and Wendy Erber, and Andrew Lim, (standing in […]

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Why MPN AEI came to Australia!

By Ann Brazeau, CEO, MPN Advocacy and Education International MPN Advocacy and Education International hosts several patient/caregiver educational programs per year. Although most take place in the United States, their goal to expand to other countries where MPN groups are interested in partnering to benefit their MPN Communities has been a priority. Through collaboration with […]

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Follow Up – Pegasys® on the PBS for MPN

Dear MPN Community, I received a letter from Professor Andrew Wilson, Chair of the PBAC, in response to my submission requesting Pegasys® (Interferon Alfa-2A) listing on the PBS for MPN. Professor Wilson stated he and his PBAC colleagues agree there is a need for interferon based therapies in MPN treatment in Australia. He said however, […]

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MPN Education Foundation

I have just been lucky enough to attend the MPN Education Foundation biennial Conference at the Mayo Clinic in Scottsdale, Arizona, in a private capacity. I was one of two Australian MPN patients, accompanied by our partners. It is impossible to summarise the whole conference in a few words. The tireless volunteer organisers from the […]

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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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