Jolanda Visser attended and presented at the inaugural MPN Horizons Conference in Serbia in early November 2016. The conference provided an opportunity for MPN Patient Representatives and Advocates to meet, discuss the issues facing MPN patients around the world and to share best practice from local groups.
On Monday 8 August 2016, members of the MPN AA attended a meeting with other advocates and stakeholders within the MPN Community, hosted by the Leukaemia Foundation of Australia in Brisbane. The meeting was chaired by Bill Petch, LFA CEO, assisted by Anna Williamson, Head of Research and Advocacy, Anthony Steele, Head of Blood Cancer Support, and Barbie Hartigan, Blood Cancer Support from LF Queensland Office. We were also very fortunate to have Dr Cecily Forsyth, Haematologist from Gosford NSW in attendance.
The aim of the meeting was to bring together interested parties to work towards a cohesive plan to improve the lives of MPN patients in Australia, identifying priorities, gaps, and a wish list.
We thank the Leukaemia Foundation for their generous hospitality and support for the meeting, and for their willingness to engage with the MPN Community to discuss the ongoing issues of MPN patients whose needs are different from those with acute blood cancers.
Myeloproliferative Neoplasms are rare and incurable. However, for the thousands of people that live with these chronic blood cancers, the challenges are very real.
We very much look forward to working together with other stakeholders into the future.
On Rare Diseases Day, 29th February 2016, 13 people with MPNs gathered in Melbourne’s CBD for lunch at the Chestnut Exchange Cafe on Little Collins Street. A wonderful day was had by all as participants chatted from late morning, enjoyed lunch together and some stayed until well into the afternoon, as time permitted. It was a great opportunity to share and compare personal experiences of MPN disease sub-types, symptoms, treatment modalities, complications and discuss the impact of living with MPNs. The day provided a chance to meet up with old friends and also to put faces to names for those who had not yet met, but may have communicated previously via electronic media.
Meetings such as this enable people living with MPNs to build social connections and support one another, which helps to reduce feelings of isolation commonly experienced by people living with rare chronic diseases.
Special thanks to everyone who attended. To those who were not able to make it on the day, we hope to see in the future at another MPN get-together.
Best wishes and good health to all. Nathalie Cook (PV)
On Rare Diseases day, 29 February 2016
, a group of Queensland MPN patients
met for lunch at Toscani’s Garden City to raise awareness for Rare Diseases
Day, where ET, PV & MF were all represented.
It was an animated gathering, leaving little time to eat lunch between
sharing stories and experiences.
For one ET patient, this was her first connection with an MPN support
group. She shared how she was diagnosed and also how she has a Son who has also
been diagnosed with an MPN. She spoke of her concern for his future and took
comfort from others who have been living with MPN’s for many years. She is also
looking forward to joining our MPN Coffee, Cake and Chat meetings hosted by the
Leukaemia Foundation QLD.
For the others, this was a time to catch up on each others progress,
treatments and generally offer support to each other.
On behalf of the group members who met, a special thanks to the staff at
Toscani’s Garden City for their very attentive care throughout the day.
