The MPN AA is also pleased to recommend the following Australian organisations and support groups patients can reach out to.
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
- Closed Facebook group – MPN Australian & NZ Myeloproliferative Neoplasm Support Community
- 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)
- 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
