New international website – MPN Hub

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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 Hub.

According to French hematologist Professor Jean-Jacques Kiladjian, MPN Hub ‘will be an open-access and unbiased educational website for all healthcare professionals …… providing the latest medical information, live congress coverage, trial updates, drug approvals, case studies as well as expert opinions.’
The twitter introduction states: ‘Lifting levels of knowledge in myeloproliferative neoplasms (MPN).  A global online platform providing latest treatment options and medical information.’

While patients are not MPN Hub’s primary audience, we believe this information is valuable for MPN patients to keep up to date about with developments in the MPN field.

For example, MPN Hub has been showcasing MPN findings from the European Hematology Association’s 2020 conference held ‘virtually’ in June this year.

Practice changing abstracts for MPN at the 2020 European Haematology Association conference

  • This is a 4 minute video overview by Professor Kiladjian.

Some of those practice changing abstracts relating to PV mentioned by Professor Kiladjian are at the links below.

  1. Should ropeginterferon become standard of care (SOC) for all patients with low-risk PV?
    While Ropeginterferon is not available in Australia, another form of pegylated interferon is available (called Pegasys).
    These findings are likely to be of particular interest to PV patients who are currently considered ‘low risk’.
    This study showed that while low risk patients are usually treated by phlebotomy only and aspirin, there were better results with interferon alpha compared with phlebotomy/aspirin only.
  2. PROUD-PV phase III results on ropeginterferon alpha-2b for polycythemia vera
    It is known that Ropeginterferon is able to reduce the Jak2 v617F allele burden. This article shows that it can also reduce associated mutations such as in TET2.
  3. TET2  mutations predict thrombotic risk in patients with polycythemia vera

Articles about drug developments/combinations in myelofibrosis presented at the EHA. This includes promising developments for MF patients refractory to ruxolitinib.

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Videos available – Peter Mac MPN patient education seminar, Melbourne, 18 February 2020

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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                        Elizabeth Pearson, Occupational Therapist
  • Keeping well with MPNs                   Nathalie Cook, Accredited Practising Dietitian
  • How to get a good night’s sleep      Dr Oliver Holmes, Psychologist

The link to the videos is here.

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MPN updates for 2020 – video from Drs Ruben Mesa and Robyn Scherber

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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 VIDEO

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MPN Patient Information Afternoon – Sydney – 23 February 2019

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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 Foundation, and also Madeline Thompson on the day.
The presentations were great – firstly Dr Renee Eslick spoke very informatively about “Diagnosis of MPN”. Sue McConaghy, psychologist, spoke on the topic “This is Not the Life I Ordered”, providing ideas about tools we could use to help manage unwelcome and unplanned events in our lives – relevant to all of us at times! We then broke for a lovely afternoon tea, and reconvened to hear Dr Carmel Sullivan speak about how yoga could enhance our physical and mental health and quality of life. Dr Cecily Forsyth followed, and spoke on the topic “Optimal Management of MPN in Australia”, about the latest research on how MPN patients should be managed, going through the 3 main MPN subtypes in order, but acknowledging the shades of grey that exist, and the need to treat each patient as an individual.
Patients seemed to be very engaged, and there was lots of chat in the afternoon tea break, and also some constructive to and fro between patients during the question time.
Videos of the two haematology presentations by Dr Eslick and Dr Forsyth are available for viewing on our MPN Video Presentations page.
Full details of the patient information afternoon, including powerpoint presentations from all the talks are available HERE.
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MPN Patient Information afternoon – Sydney

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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.

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