MPN Charity Dinner raises $23,505 for MPN research

Congratulations to Jolanda Visser on her outstanding success - raising $23,505 at a MPN Charity Dinner, in Adelaide,  which she organized on behalf of the MPN AA. The MPN AA are grateful for the support of the Leukaemia Foundation with Julia Clarke as the Master of Ceremonies and Kerryn Lambert,…

MPN AA donates $20,000 to MPN Interferon Initiative

The MPN Alliance Australia is proud to announce that they have donated a total of $20,000 to support the MPN Interferon Initiative. In April 2018, the MPN (Myeloproliferative Neoplasms) Research Foundation (MPNRF) and MPN Alliance Australia (MPN AA) announced a research partnership focused on the…

European Hematology Association (EHA) 2018 Update

Haematologist Professor Andrew Grigg recently attended the European Haematology Association (EHA) conference in Stockholm and has kindly allowed the MPN AA to share his summary of MPN studies presented at the conference.  Many thanks Professor Grigg! View Professor Grigg's summary here.  …

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 that this…

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…

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…

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…

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.

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…

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…

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…

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.

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…

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.

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 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…

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…

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…

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…

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,…

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…

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…