|There are now more than 1500 patients registered on the Fontan Registry in Australia and New Zealand making it the largest Fontan database in the world.
The Registry was created in 2009 as a population-based register of Fontan patients’ data. It aims to get a better understanding of short and long term health outcomes, as well as factors which can be modified to improve Fontan patients' health and well-being. Fontan patients often describe themselves as living with 'half-a-heart'.
Julie Neilsen has been the NZ Parent Representative on the registry since December 2013 and Rob Lutter is the the Heart Kids NZ representative.
Julie, who attended this year, said it was very exciting to see the growth, patient longevity and changing views that research is leading and to know that the team at Starship is part of this development. "For example when my daughter was little we needed to be very careful with her exercise regime. Parents and patients are now being encouraged to maintain good fitness levels and there is tangible research to back this up.”
The next education day will be in Melbourne. For all those that may be interested watch the Facebook page for information and then the airlines for cheap deals to Melbourne!
Created on: 11 October 2018