News

REVEAL study Findings from an important new study for the management of polycythemia (PV) patients have just been released. Called the REVEAL study*, it shows that leukocytosis (a high white cell count) is a risk factor for thrombosis (blood clots) in patients with PV. The study showed thrombosis…

The World Health Organisation has just revised its guideline for diagnosis of anaemia thanks to a team of Australian researchers from the Walter and Eliza Hall Institute in Melbourne, led by Professor Sant-Rayn Pasricha. These Australian researchers  have already: developed a drug for PV patients…

The Leukaemia Foundation have added another webinar to their suite of general webinars which focus on living well. The latest webinar is now available and is about creating meaning in the face of blood cancer. It is available HERE. And don't forget the wonderful webinar from Dr Ranjana Srivastava.…

The Cancer Council, in conjunction with the Victorian government, has just released an informative study about the importance of exercise in reducing cancer risk. Their new research estimates that more than three times as many cancers are attributable to physical inactivity than previously thought. The…

QIMR Berghofer Medical Research Institute researchers have discovered a potential new treatment for Acute Myeloid Leukaemia and other cancers. Watch their exciting news HERE

Exploring the Molecular Aspects of Myeloproliferative Neoplasms Associated with Unusual Site Vein Thrombosis: Review of the Literature and Latest Insights A paper has just been released about unusual thrombosis sites in patients with myeloproliferative neoplasms. It includes a literature review and…

These guidelines titled 'Essential thrombocythemia: 2024 update on diagnosis, risk stratification, and management' have just been released. They are a collaboration between the American haematologist Professor Tefferi and Italian haematologists Professor Vannucchi and Dr Barbui. For a direct link…

The British Society for Haematology has just released (November and December 2023) new guidelines for myelofibrosis. As these are British guidelines, not all treatment options are available in Australia and Australian practices may vary. However the guidelines provide useful insight into diagnosis…

Every year, the international MPN Advocates Network holds an MPN patient conference featuring many international MPN experts discussing the latest developments in MPN management. The videos include: New Challenges in Diagnosing MPN Diagnostic Criteria for ET, PV & MF, biological aspects …

A German study has just been released which looks back at arterial and venous thromboembolic complications in 832 patients with Myeloproliferative Neoplasms (MPNs). This study aims to add some additional data to what is currently quite limited information about the most common sites, incidences, and…

The Leukaemia Foundation has provided a very interesting webinar for blood cancer patients about ageing and blood cancer. The full video of the webinar is now available HERE. The guest speaker was Dr Ranjana Srivastava OAM Dr Srivastava is an internationally renowned oncologist, Fulbright scholar…

Here is an Australian news item about the US FDA approval of Momelotinib, a new drug for Myelofibrosis. This is significant as there are few treatment options for those with myelofibrosis, and this is another option for those for whom other therapies are unsuitable. We would love to see it made available…

A study has been released on the incidence of polycythemia vera in Taiwan for 2016-2017. This report is of interest due to its large sample size of 2647 PV patients and because it covers a wide array of information, including treatments and mortality figures (although noting that interferon treatment…

The Leukaemia Foundation runs webinars for blood cancer patients. The latest is titled 'Fear of cancer recurrence', and also deals with the fear of progression, which is more relevant in the case of MPN patients. It is presented by clinical psychologist Dr Charlotte Tottman and is very informative. It…

  Image: Visual abstract shows overlap between MPNs and chronic inflammatory disease. An interesting perspective on MPNs from respected US haematologist and researcher, Dr Angela Fleischman and her colleague was recently published. The article highlights the overlap between MPNs as…

MPN specialist haematologists, the USA's Ayalew Tefferi and Italy's Tiziano Barbui have just released a very extensive overview of polycythemia vera. The overview is detailed and includes: an important update that recognises interferon as a first line treatment option along with hydroxyurea,…

MPN specialists  Professor Claire Harrison, Guy’s and St Thomas’ NHS Foundation Trust from the UK, Professor Jean-Jacques Kiladjian, Saint Louis Hospital, Paris,  and Alessandro Rambaldi, MD, University of Milan have collaborated to provide an up to the minute roundtable series on management of…

The International Society on Thrombosis and Haemostasis (ISTH) is conducting a survey to find out more about patient awareness of cancer-associated thrombosis (blood clots) and how to help prevent and/or identify blood clots if they occur. The ISTH is keen to obtain feedback from patients from Australia…

A recent presentation from MPN specialists Professor Jean-Jacques Kiladjian, Saint Louis Hospital, Paris, and Professor Claire Harrison, Guy's and St Thomas' NHS Foundation Trust from the UK discusses the importance of maintaining hematocrit control in patients with polycythemia vera (PV) as well as…

The American Society of Hematology's journal Blood, this month features a review series of articles about myeloproliferative neoplasms. The articles describe the latest advances in the world's understanding of  MPNs.  All except the article on ET are open access to read in full. “Genetic basis…

Read more about the newly published findings on an iron link which offers a new treatment hope for polycythaemia vera. "A landmark discovery linking iron regulation to a rare blood cancer has led to clinical trials of a potential new treatment for patients with the incurable disease. The study focused…

  A ground-breaking new treatment for polycythaemia vera (PV) has been developed here in Melbourne by researchers Dr Cavan Bennett and Professor Sant-Rayn Pasricha from the Walter and Eliza Hall Institute (WEHI). This treatment appears to avoid the need for venesections. Phase 1 clinical…

A fascinating study has just been released about diagnosis and treatment of patients with ET and MF in Germany, especially as a precise diagnosis impacts on access to approved therapies. "This study reports on a chart review conducted to evaluate the real life approach regarding clinical characteristics,…

A recent review from MPN specialist Professor Jean-Jacques Kiladjian in France and colleague Bruno Cassinat about current diagnostic and treatment approaches to splanchnic vein thrombosis is of interest. The abstract recommends: "Therefore, though screening for JAK2V617F mutation should be the starting…

This patient conference in the US titled 'The 13th Joyce Niblack Memorial Conference on Myeloproliferative Neoplasms' features many of the world's leading MPN experts. The conference was held on 18 and 19 February 2023 and these 'hot off the press' presentations and videos feature the latest updates…

The Lancet has just published findings from phase 3 of the trial for symptomatic myelofibrosis patients with anaemia. The trial was titled MOMENTUM and is officially referred to as "Momelotinib versus danazol in symptomatic patients with anaemia and myelofibrosis (MOMENTUM): results from an international,…

A retrospective observational study of over 28,000 polycythemia vera (PV) patients in the USA has just been published in the January 2023 edition of the Annals of Hematology. The main finding suggests that in the US, currently available PV treatments may not be used to full advantage. Conclusions…

An online forum was recently held in the UK focusing on 'Menopause, hormone replacement therapy and myeloproliferative neoplasms.' The panel included Debra Holloway, Nurse Consultant Gynaecology, Guy’s & St Thomas’ NHS Foundation Trust, Professor Claire Harrison, who is an MPN expert haematologist,…

Reflections on the 2022 MPN Horizons meeting, Netanya, Israel from Ken Young, MPN AA team member The MPN Horizons meeting was held this year in Israel and online. It was a great success with many excellent presentations. Ken recommends in particular watch the sessions from Medical Session 3 which…

Dr Ruben Mesa, an international MPN expert provides a summary of the highlights for MPN patients from the December 2022 American Society of Hematology (ASH) annual meeting. CALR monoclonal antibody discovered! Of particular note is the incredibly exciting news of the discovery of a CALR monoclonal…

Anne Brazeau, the founder and CEO of MPN Education and Advocacy International has kindly made available an excellent wide ranging video about interferon use in MPNs. The video showcases a presentation about interferons by Gabby Hobbs, MPN specialist and Clinical Director of Leukemia Service at Massachusetts…

September is blood cancer awareness month and an ideal time to reflect on living your best life with an MPN! The SIMM study (Survey of integrative medicine in myeloproliferative neoplasms) found 'an overall pattern of lower symptom burden, fatigue, depression, and higher quality of life were revealed…

The MPN AA is pleased to share news of the publication of the latest booklet on healthy eating from the Leukaemia Foundation. 'Eating Well - a guide for patients and their support people', was updated in collaboration with Nathalie Cook OAM, Accredited Practising Dietitian. Nathalie has a special…

MPN AA is thrilled to announce the grant of $30,000 for an MPN Alliance Australia Fellowship titled Engineering and Pre-Clinical Validation of CALR+ directed CAR-T cells.  The grant has been made to an early career researcher from the South Australian Health and Medical Research Institute (SAHMRI)…

The Leukaemia Foundation has just launched Season 2 of their 'Talking Blood Cancer' podcast series. We are delighted to let you know that the first podcast features the MPNAA's own Nathalie Cook. She shares her own MPN story and her success with using Pegasys (pegylated interferon) for controlling…

The Leukaemia Foundation has released its latest newsletter for MPN patients and it's an excellent read. There is so much happening in the MPN space in Australia. Individual links to each story in the July newsletter are provided below. 1.  A tool predicting the potential progression of MPNs is…

MPN specialist haematologist Dr Ruben Mesa has provided an extensive video update on evolving therapy in MPNs. It's a very comprehensive overview of current US guidelines and emerging therapies. For patients with myelofibrosis (MF), the discussion on MF therapies starts at 27.42 minutes into the video. The…

Ken Young, a founding member of the MPN AA and well known to the Australian MPN community, has co-authored an article about how fatigue can be a problem for MPN patients. The research surveyed 90 patients who had already identified as suffering fatigue. Researchers then undertook qualitative research…

This year has seen two significant bodies of work published about the timing of the acquisition of blood cancer mutations in patients with myeloproliferative neoplasms (MPNs). These findings lend further support to earlier research that, in many cases, these mutations occurred in utero or early childhood.…

A review article dated 2 May 2022 in the American Cancer Society Journal 'Cancer' titled 'Defining disease modification in myelofibrosis in the era of targeted therapy' has outlined a promising way forward for myelofibrosis (MF) targeted therapies. The authors are several renowned MPN specialists…

European LeukemiaNet recommendations for cytoreduction for polycythemia vera (PV) patients under 60 have just been updated and now published in The Lancet Haematology. The expert panel of European LeukemiaNet (ELN) investigators recommends that "patients with polycythaemia vera who are younger than…

Some of the UK's leading MPN haematologists have published results of a retrospective real-world study of current treatment pathways for myelofibrosis (MF) in the United Kingdom. The study is published in the Journal 'Therapeutic Advances in Hematology'. The abstract summary explains: 'These results…

MPNs have been featured in an article in the Australian Journal of General Practice titled 'Myeloproliferative neoplasms: Classifications and an approach to diagnosis'. The aim of the article is to provide general practitioners (GPs) insight into the classification and clinical approach to diagnosis…

Adelaide researchers have discovered a possible new method to treat myelofibrosis (MF), that could have the potential to greatly extend lifespan without the side effects caused by current treatments. While MF symptoms can often be controlled with the drug Ruxolitinib, side effects may be problematic…

Today is RARE DISEASE DAY. MPN expert, clinician scientist Professor Andrew Perkins, is interviewed about his team's work on MPNs HERE. WATCH MPN expert Professor Andrew Perkins and the MPNAA's Ken Young speaking about MPNs.            

A phase 3 clinical trial has been underway for myelofibrosis patients who are symptomatic, suffer from anaemia and have been previously treated with a Jak inhibitor. The trial was using the drug Momelotinib. Findings just released on 25 January this year are very encouraging.  Momelotinib achieved…

The MPN AA is absolutely thrilled to learn of an Australia Day award for our team member, Nathalie Cook. Nathalie won the award for 'service to dietetics'. Nathalie is an Accredited Practising Dietitian and has worked tirelessly for her patients. However we know her best for her work in a volunteer…

European haematologists have been undertaking ongoing studies of MPN patients who have contracted COVID.  This study covers the second COVID wave of 304 MPN COVID cases from 39 different hematology centres.  Their findings are outlined in just released (January 2022) correspondence in the International…

MPN research was showcased extensively at American Society of Hematology's (ASH) December 2021 meeting. Research interest in MPNs continues to attract attention and effort internationally.  Below, Dr Ruben Mesa provides an overview of some ASH highlights for MPN patients. Many thanks to MPN Advocacy…

This excellent webinar, organised by the Leukaemia Foundation, features patient stories as well as presentations by: clinical haematologist Cecily Forsyth who has a special interest in MPNs, health psychologist Jane Fletcher whose presentation is incredibly encouraging and motivating, and physiotherapist…

The latest Leukaemia Foundation's MPN newsletter features a detailed and wide-ranging interview with MPN expert, Professor Andrew Perkins. As well as his ongoing care for MPN patients as a clinical haematologist, Professor Perkins and team are focussed on improving diagnostics and treatment for MPN…

The Leukaemia Foundation provides a range of information and services to support and inform blood cancer patients. It has just released a new MPN booklet Myeloproliferative Neoplasms – a guide for people with MPN and their support people (November 2021). This is a detailed booklet about MPNs, medically…

Many of you will have noted the October 2021 advice from ATAGI which recommends a third primary dose of COVID-19 vaccine for severely immunocompromised patients. The advice elaborates that this includes patients with haematological malignancies (blood cancers), and it is intended to address the risk…

The October edition of 'Leukemia' features a letter to the editor about life expectancy for polycythaemia vera (PV) patients. The US study noted that, while historically, thrombosis has been the major contributor to early mortality and the leading cause of death in PV, vigilant phlebotomy to a target…

An update to the Australian Cancer Atlas was released earlier this year and for the very first time it included MPNs. This was such an encouraging development for MPN research. Since that time, researchers and epidemiologists have been exploring MPN incidence further and a paper has just been released…

Norman Swan's Health Report has featured an item about people with blood malignancies and their response to Covid-19 vaccines. The item relates to new research published in the Lancet Haematology.  This research found that people with blood malignancies may not produce as many protective antibodies…

In what we believe could be a world first, myeloproliferative neoplasm (MPN) data is now included in the latest Australian Cancer Atlas. This Atlas provides national data on how cancer diagnosis and excess death rates vary by geographical area across Australia.  This latest update incorporates details…

MPN patients are fortunate to have access to videos and presentations from the 12th Joyce Niblack memorial conference on MPNs which features the world's leading MPN experts.  It was held virtually in February 2021 and explains the latest developments in MPNs around the globe. The information is specifically…

The 12th Joyce Niblack Memorial Conference for MPN patients is being held as a virtual conference on 20 February this year. Featuring many of the world’s leading MPN experts and researchers, it is a brilliant opportunity for MPN patients to stay up to date with the latest evidence and information…

2020's virtual ASH conference hosted some fascinating and ground breaking findings on MPNs. This information is all courtesy of MPN Hub. Does interferon alpha prolong survival and prevent progression in patients with PV? A longitudinal study of 470 PV patients showing superior myelofibrosis free…

Dr Jyoti Nangalia and a team of researchers from the Wellcome Sanger institute and Cambridge University in the UK will be presenting some fascinating findings at this years virtual American Society of Hematology (ASH) meeting. Extensive genetic mapping by the team finds that MPNs "originate from driver…

The MPN Hub which launched earlier this year is "an open-access online resource, dedicated to providing balanced, credible, and up-to-date medical education in MPN.  It shares new data, evidence-based articles, therapy approvals, expert opinions, and international congress coverage to treatment teams…

The Australian Bone Marrow Donor Registry is urging Australians to consider becoming a bone marrow donor.  It's a very simple process through its ‘Strength to Give’ campaign. Please ask your family, friends and their friends to consider becoming a donor. For a small number of  MPN patients,…

The Leukaemia Foundation has announced a ground-breaking initiative for people with blood cancer in Australia with the launch of the National Strategic Action Plan for Blood Cancer. The Australian Government commissioned the Leukaemia Foundation to develop the National Action Plan on behalf…

If you were not able to join the inspiring and informative Australian MPN Awareness Day webinar, you can watch it HERE. The MPNAA is grateful to Professor Andrew Perkins, Professor Wendy Erber, Professor Peter Baade as well as the Leukaemia Foundation and MPN patient Helen Williams for making this event…

MPN AA is very proud to announce that with the help of our supporters, we have donated $15,000 for MPN research in Australia to Professor Wendy Erber and her colleagues, Dr Kathryn Fuller, Dr Henry Hui and Dr Belinda Guo at the University of Western Australia. The team are undertaking research on…

We are pleased to discover that several European and American hematologists with a particular interest in MPNs have collaborated and established a website and twitter presence solely devoted to MPNs called MPN Hub. A facebook page and instagram account also complete the social media presence of the MPN…

Myelofibrosis patients may be interested to know that the pharmaceutical company Sierra Oncology has announced the global launch of the new phase III MOMENTUM clinical trial. This trial is evaluating the efficacy of momelotinib, a JAK1, JAK2 and ACVR1 inhibitor, versus active comparator danazol in patients…

Researchers at Queen’s University Belfast and the University of Aberdeen, invite you to take part in an online research study investigating the impact of the COVID-19 (coronavirus) pandemic on caregivers and patients with cancer, pre-cancerous conditions and rare diseases. This survey is open to all…

Australian MPN patients are invited to take part in a research project called Living with MPN Fatigue. This project aims to improve the understanding of the human experience of MPN fatigue (being tired). You are eligible to take part if you have an MPN or CML diagnosis, live in Australia and have…

MPN expert (and telehealth expert) Associate Professor Kate Burbury from the Peter MacCallum Cancer Centre and MPNAA's Nathalie Cook  join the Cancer Council Victoria's Danielle Spence and Katherine Lane, as well as primary care expert Professor Jon Emery from the University of Melbourne, to explore…

The MPN AA has set up a COVID-19 resources page for MPN patients.  It includes information from Australian and international MPN experts as well as information about keeping well with your MPN. It can be accessed HERE.  

Read this newly published guide here. The guide is a companion to the new ALLG clinical guidelines on COVID-19 for haematology and oncology published in the Medical Journal of Australia, (20.3.20). A great collaboration with reviews by over a dozen cancer charities.  

The Leukaemia Foundation puts out a regular MPN Newsletter for MPN patients and their families and carers. It is a very informative read and can be accessed HERE. And don't forget the upcoming MPN support group in Brisbane on 14 March run by the Leukaemia Foundation.

Peter Mac has kindly made available to patients the videos from the MPN Patient Education Seminar held on 18 February 2020. This event included the following sessions: MPNs, what are they?                       Dr Kate Burbury Fatigue Management                     …

Drs Mesa and Scherber, haematologists from the Mays Cancer Centre in the US, discuss the latest findings from the American Society of Hematology meeting in December 2019, as well as the latest updates regarding new treatments for MPNs.  They also discuss quality of life issues for MPN patients. WATCH…

A summary of the latest information on MPNs from the ASH 2019 (American Society of Haematology) meeting is available, courtesy of MPN Advocacy & Education International. ASH 2019 summary videos on MPNs

Professor Wendy Erber and her colleagues, Dr Kathryn Fuller and Dr Henry Hui at the University of Western Australia, (pictured above) are undertaking research on a new technique to see if they can detect which MPN patients may be at risk of progressing to leukaemia or marrow fibrosis. It is hoped…

MPN Alliance Australia is pleased to advise that we have taken initiatives to improve accessibility to information on our website for patients and families in languages other than English. We now offer treatment information on Hydroxyurea, Interferon, Anagrelide and Ruxolitinib in Arabic via our website.…

An exciting new change has occurred to the way Australians can register to become blood stem cell donors. A simple cheek swab is now all you need to do to register through the Australian Bone Marrow Donor Registry's 'Strength to Give' campaign. For a small number of  MPN patients, the only possibility…

Pictured here is Dr Steven Lane, Head of Cancer Program QIMR Berghofer Medical Research Institute, receiving a donation of $35,000 from Lara Chapman and the MPN AA. The money is being used to further understand the mechanisms of how MPNs turn into leukaemia. The research is underway in Brisbane…

NEW MPN SUPPORT GROUP - Peter MacCallum Cancer Centre, Melbourne! We are delighted to announce the PeterMac MPN team is launching an MPN Support Group on Tuesday 29 Oct from 10:00-1130am in the Wellbeing Centre, Level 1, with morning tea provided. This group plans to meet monthly. Anyone living with…

What is Light The Night? Light the Night is the Leukaemia Foundation’s beautiful evening lantern walk, where Australians come together and transform the darkness into a sea of glowing light to give hope to all those impacted by blood cancer. It’s your night to walk beside those facing their…

Explore the new Carer Gateway Carers in Australia can now find new supports and services, as well as clear advice and tips, on the new Carer Gateway website. If you care for a family member or friend, then Carer Gateway could help you. The new Carer Gateway: provides practical information and…

The Leukaemia Foundation supports MPN Awareness Day (September 12).  

Novartis is proposing to the Australian Pharmaceutical Benefits Advisory Committee that Jakavi (ruxolitinib) be made available on the PBS for patients with polycythemia vera (PV). Currently Jakavi is on the PBS for patients with myelofibrosis in certain circumstances. The use of Jakavi by Novartis…

Thanks to all our donors who made it possible for Nathalie Cook and Ken Young of MPN AA to present a cheque today for $10,000 to Dr Cavan Bennett and haematologists A/Prof Kate Burbury & Dr Sant-Rayn Pasricha of Peter Mac and WEHI to support their exciting research into PV. We raised over $7000…

An update on the progress with these newly developed drugs is provided by Associate Professor David Ross, Consultant Haematologist at Royal Adelaide Hospital and Flinders Medical Centre, Adelaide ———————————————————————————— Treatment options…

We have a delightfully supportive and friendly group of MPN patients in the Canberra region so if you live in or around Canberra, please come and join us. There is always a great deal of news to share, experiences to recount, even sometimes blood test results to discuss! We are meeting in a lovely…

MPN AA is supporting MPN research at Melbourne's Peter MacCallum Cancer Centre and Walter & Eliza Hall Institute of Medical Research, investigating a new way to treat iron deficiency symptoms and improve quality of life for people living with polycythaemia vera (PV). 100% of all tax deductable donations…

You can now watch the video presentations from the 11th Joyce Niblack Memorial Conference on Myeloproliferative Neoplasms , 2-3 March 2019, Scottsdale, Arizona.  The powerpoints of the presentations are also available to read online. This biennial patient conference is organised by the MPN Education…

New research led by Cancer Council Queensland and Curtin University has investigated the patterns and trends of myeloproliferative neoplasms (MPN) for the first time in Australia. The research, published in the American Journal of Hematology, explored the impact of MPN, which affects more than 5000…

MPN AA and the Leukaemia Foundation collaborated to stage this very successful MPN patient information event at Royal North Shore Hospital in Sydney, attended by 60 patients and family members. MPN AA is very grateful on behalf of MPN patients for the great job done by Greg Zotos from the Leukaemia…

Ropeginterferon alfa 2b is a longer acting form of pegylated interferon. It has very recently been approved for marketing in the EU for the treatment of Polycythemia Vera under the name “Besremi”. Read the full news announcement here.

Andrew and Esther Schorr from Patient Power in the USA have long been strong advocates for patient knowledge and empowerment. They recently visited Australia and New Zealand as part of their advocacy work. As Andrew has an MPN (myelofibrosis), he very much understands the issues and challenges involved…

SAVE THE DATE. MPN AA has been negotiating with the Leukaemia Foundation and a number of great presenters to hold an MPN Patient information afternoon in Sydney on Saturday 23 February 2019. Further details and opportunity to book a  place coming soon.

On the 30th November, Lara Chapman represented the MPN Alliance Australia as an invited guest, at the 2nd Annual ASH Meeting, hosted in San Diego by the MPN Research Foundation. The MPN AA would like to thank our partner organisation, MPN RF, for the invitation. We appreciate the opportunity to follow…

There has been some recent media attention about the value of exercise for cancer patients.  In May 2018, Associate Professor Prue Cormie, an accredited exercise physiologist explained that 26 cancer organisations were calling for exercise to be prescribed to all cancer patients as part of routine…

Many thanks to Asher Packman for holding a 'Blood Bath" for Blood Cancer Awareness Month.  Despite a very chilly day, a total of $350 was raised.  Asher has donated all proceeds to the MPN Fund and the MPN Alliance Australia.  The MPN AA would like to thank Asher for his support.

Did you know around 60,000 Australians are living with a blood cancer and around 35 people are diagnosed every day? September is Blood Cancer Awareness Month (BCAM) and, as such, here's your opportunity to support those in need, their caregivers, friends and families. What better way than to…

Canberra MPN 'Coffee and Chat’ group Here in the nation’s capital, we have established a regular ‘coffee and chat’ group for MPN patients and their families or carers.  So far we have had two monthly get-togethers in a cosy lounge area of a Civic café, Xchange on London, on a Saturday morning.…

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,…

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…

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.  …

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…

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…

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…

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…

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…

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…

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…

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.

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…

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.

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…

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…

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…

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…

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 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…

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…

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.

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…

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,…

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…