Entries by Sue

Pegasys® (pegylated interferon alfa-2A) listed on PBS

We are so proud of you Nathalie, and so thankful for your huge efforts on behalf of the MPN community in Australia. Your passion, networking and intellectual rigour have absolutely got us to a place no one thought we would ever reach. We as a community have been told so many times in the past […]

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WA MPN Symposium

Sue Taylor and Nathalie Cook from the MPN Alliance Australia, were invited, as guests of the Faculty of Health and Medical Sciences, University of Western Australia, to attend and present at the WA MPN Symposium. Sue Taylor presented on the advocacy of the MPN Alliance Australia whilst Nathalie Cook presented on healthy eating and the […]

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New research partnership

Chicago, IL and Australia The MPN (Myeloproliferative Neoplasms) Research Foundation (MPNRF) and MPN Alliance Australia (MPN AA) are proud to announce a research partnership focused on the MPN Interferon Initiative. MPNRF and MPN AA are both patient advocacy organizations who work on behalf of patients with myeloproliferative neoplasms, a group of rare, chronic blood cancers. […]

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BREAKING NEWS: PBAC has recommended the government change the listing for Pegasys® to UNRESTRICTED ACCESS

Dear Friends, Roche phoned me today to announce the Pharmaceutical Benefits Advisory Committee (PBAC) recommended in it’s November 2017 meeting that the Government change the PBS listing for Pegasys to UNRESTRICTED ACCESS, to enable MPN patients to obtain Pegasys on the PBS (and also other blood cancers, such as myeloma and lymphoma.) The PBAC November […]

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MPN Horizons Conference 2017

Jolanda Visser attended and presented at the inaugural MPN Horizons Conference in Serbia in early November 2016. The conference provided an opportunity for MPN Patient Representatives and Advocates to meet, discuss the issues facing MPN patients around the world and to share best practice from local groups.

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MPN Online Charity Art Exhibition raises $14,788

The MPN Online Charity Exhibition was conceived by artist Lara Chapman, with the aim of raising awareness (and funds) for a little known rare group of blood cancers called ‘Myeloproliferative Neoplasms’ (MPNs). There is no cure and very limited drug therapies. Lara’s goal was to raise funds to contribute toward a research project. Lara herself […]

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Pegasys® Update – Great News!!

Roche phoned me on 4th August to update me on the Pegasys for MPN issue. I am delighted to announce that Roche made a PBAC submission in late July, requesting UNRESTRICTED ACCESS of Pegasys on the PBS. This means that if approved, Pegasys will be available for prescription for any indictation, including MPN. I was […]

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Jolanda Visser accepts $1,000 donation to the MPN fund

The MPN AA would like to thank the Big A Boutique Op Shop from the Colonel Light Gardens Church of Christ in South Australia for the generous $1,000 donation they issued the Leukaemia Foundation’s MPN Fund. The Big A Boutique regularly donates part of their proceeds to charities and organisations that want to make a […]

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European Haematology Association (EHA) Conference – Madrid

Haematologist Dr Cecily Forsyth recently attended the European Haematology Association (EHA) conference in Madrid and has kindly prepared a summary of the MPN studies presented at the conference, for MPN AA to share with the MPN community. Many thanks Dr Cecily! View Dr Forsyth’s summary here.

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Medicinal Cannabis Consumer Update

On May 18, Ken Young attended the Medicinal Cannabis Consumer Update organised by the Consumer Health Forum on behalf of the Commonwealth Department of Health and the Australian Advisory Council for the Medicinal Use of Cannabis. There has been considerable media attention to the decision by the Australian and State Governments to facilitate access to […]

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