Videos from ASH (American Society of Haematology) 2019

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

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Better accessibility to MPN AA website information for non-English speakers

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. We are extremely fortunate to have been donated the services of an accredited Arabic translator.

Due to the substantial cost involved of translations, Arabic is the only language so far that we are able to provide.  We hope in the future to have others but need to rely on the generosity of appropriately accredited translators.

We have also uploaded a Google translate button onto the website which provides our information in all the world’s main languages. The translate button appears at the top left-hand corner of each MPN AA website page. This service is used by other respected organisations such as the Leukaemia Foundation and the Therapeutic Goods Administration.

As with the English language information on the website, translated information is general in nature, and it is the responsibility of all patients to ensure that they seek appropriate medical advice in the light of their own particular circumstances in relation to diagnosis and treatment of their MPN.  It is not intended that patients rely solely on anything they may read on this website.

 

 

 

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MPN Patient Information Afternoon – Sydney – 23 February 2019

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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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.

 

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