Rare Diseases Day – Victoria
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)