Australian and international support

Weekly coffee and chat in Canberra

Some of the members of the Canberra MPN walking group enjoying a covid safe coffee.

A group of Canberra MPN patients run a weekly walking group on Monday mornings followed by a coffee and chat.
Anyone not keen to join the walking part is very welcome to join the coffee and chat.
Catch ups are held in a covid safe environment. If you would like to join the group 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
• Chronic Illness Alliance – WorkWelfareWills is a plain English web guide to Victorian legal issues around health and life changes. Laws will be different in other states of Australia.
• Lifeline Australia – Crisis support & suicide prevention
• NDIS – National Disability Insurance Scheme