Rare Diseases Day – Queensland
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.