Australian and international support

Weekly coffee and chat in Canberra

Some of the members of the Canberra MPN group enjoying a coffee.

A group of Canberra MPN patients run a weekly walking group on Monday mornings followed by a coffee and chat.
Anyone not keen on the walking part is very welcome to come along for the coffee and chat.
If you live in Canberra or surrounds and would like to join the group please email the MPN AA at mpnaa@mpnallianceaustralia.org.au

Brisbane MPN catch ups

There will now be two lots of Brisbane catch ups being offered by wonderful MPN patients.

The first ones are run quarterly and offered by long time MPN patient Lesley Royle. Lesley has been offering friendly and supportive MPN catch ups in Brisbane for years! The most recent one was a delightful Christmas lunch at her place (see photo below).
If you’d like to join Lesley at the next quarterly catch up, please check our Events page for details as they will be advertised there.

Additional location for coffee and chats in Brisbane
New MPN AA team member Sandra has kindly offered to start an extra coffee and chat group to connect with other MPN patients in Brisbane.
Sandra thought it could be helpful to those patients who live in the eastern and inner-city suburbs of Brisbane, which are nearer to her home.
If you would like to connect, please email the MPN AA at mpnaa@mpnallianceaustralia.org.au.

Australian/NZ Support Groups

Within Australia and New Zealand, the following organisations and support groups provide MPN support to the MPN Community:

• Leukaemia Foundation – provides monthly facilitated online support groups, including a men’s group.
• MPN Australian & NZ Myeloproliferative Neoplasm Support Community (a closed facebook group) – this is very supportive and informative.
• MPN AA Facebook Page
• Leukaemia and Blood Cancer New Zealand

International Organisations

There are several international organisations, which have and continue to provide a wealth of MPN information, often with video presentations from MPN experts, to MPN patients and their families.
The MPN AA recommends the following sites:

• MPN Advocacy & Education International – dedicated to providing knowledge, support, and resources patients will need as they adjust to living with an MPN (includes ‘Women & MPN’ conference videos).
• MPN Education Foundation – hosts MPN conferences with videos available online as well as an email support group (see next entry below)
• MPN-NET: an on-line MPN patient to patient support community
• MPN Research Foundation – goal is to stimulate original research in pursuit of new MPN treatments.
• MPN interferon forum (facebook) – this is a very informative and supportive group for MPN patients thinking about starting on interferon/ using interferon.
• MPN with MPL mutation (facebook) – a small and supportive international facebook community for those with the MPL mutation.
• MPN Voice – (UK site) MPN Voice’s mission is to provide clear and accurate information and emotional support to everyone who has been diagnosed with an MPN and their families/friends.
• MPN Stichting NL – (Dutch language site)
• Patient Power – interviews top MPN medical experts, researchers, dedicated advocates and inspiring, knowledgeable patients.
• PV Reporter – created to provide “easy access” to pertinent information on MPNs.

Other Australian Organisations

• Angel Flight Australia – A charity which co-ordinates non-emergency flights to assist country people to access specialist medical treatment.
• Australian Government – Cancer Australia
• Australian Government – Carer Gateway – National online and phone service providing practical information and resources to support carers.
• Australian Government – Department of Health – Palliative Care and planning for end-of-life care
• Australian Government – Services Australia – Payments for people living with an illness, injury or disability
• Cancer Council
• Lifeline Australia – Crisis support & suicide prevention
• NDIS – National Disability Insurance Scheme