MPN AA Resources
MPNs are rare chronic cancers amd patients are not always provided with relevant, up to date information. Here are some resources you might find helpful.
One of the most important self-management things we can do with MPN is to look after our cardiovascular health, to reduce risk of blood clots. Eating a diet rich in high fibre plant foods (fruits, vegetables, legumes and whole grains), and including moderate amounts of lean proteins, low fat dairy and heart-healthy fats like olive oil, nuts and seeds protects our heart health. This link to The University of Sydney’s Heart Research Institute contains free downloadable information on nutrition, recipes and lifestyle tips for heart health.
ORDER: Wallet Cards
In response to requests from the MPN community, the MPN Alliance Australia has produced a Wallet Card. The card is double-sided. The front of the card lists the MPN Alliance Australia’s contact details, website address, and facebook page. The back of the card is designed to be completed by the card holder. It can be used in an emergency; or it can assist in explaining the name of your disease and how to spell it; major individual risks and symptoms; current medications and any known allergies.
If you would like to order your Wallet Card, and/or a clear plastic protector for the card, please place a request through the Contact MPN AA page. The card is provided FREE OF CHARGE by the MPN Alliance Australia.
Help us reach Australian haematologists! If you are willing to pass one of the Wallet Cards onto your haematologist, please request a second copy.
READ: Managing Your Overall Health with an MPN
Accredited Practising Dietitian Nathalie Cook gave the following presentation on “Managing Your Overall Health with MPN” at the 2016 Leukaemia Foundation Blood Cancer Conference in Melbourne. Nathalie also has lived experience with MPN and was diagnosed with polycythaemia vera in 2010.
Download Managing Your Overall Health with an MPN (PDF 17169kb).
WATCH: MPN Management and current treatment
Dr Steven Lane is a clinical haematologist
in private practice and at Royal Brisbane and Women’s Hospital (RBWH). He is also
a clinical researcher with a focus on myeloid blood cancers including acute
myeloid leukaemia, myelodysplasia and the myeloproliferative neoplasms. Watch his recent presentation on “MPN Management and current treatment”:
The MPN AA is also pleased to recommend the following Australian organisations and support groups patients can reach out to.
VISIT: Australian Support
Within Australia, the following organisations and support groups provide MPN support to the MPN Community:
- Leukaemia Foundation
- MPN Australian & NZ Myeloproliferative Neoplasm Support Community
- MPD-oz Email Support Group
- The MPN AA Facebook Page
VISIT: International Organisations
There are several international organisations, which have and continue to provide MPN information to MPN sufferers and their families. The MPN AA recommends the following sites:
- MPN Research Foundation
- MPN Advocacy & Education International
- MPN Voice
- MPN Stichting NL
- MPN Community Support
- Patient Power
- PV Reporter