During April HAE Australasia held their 2019 HAE Patient & Carers Conference on the Gold Coast, Queensland. This was the first time the conference was held over two days, and also the first time we had separate youngsters sessions.
Day 1 opened with an amazing and inspiring keynote speech from Gidon Goodman, who is 16 years of age and has Gaucher’s disease. He shared his story of advocacy and persistence through his work as the President of Gaucher Association of Australia and New Zealand. We were very fortunate also to have world-renowned speaker Dr Marc Riedl presenting on how genes play a part in HAE, Dr Connie Katelaris presenting on HAE treatments updates in Australia and New Zealand, and Tricia Mullins spoke about patient and carer advocacy. Furthermore, Henrik Balle Boysen and Anthony J. Castaldo gave an update on HAE International and its initiatives – and we had great questions from patients and carers during the Q&A session.
Meanwhile, in a separate room, the youngsters spent time getting to know each other, they learned about HAE with Dr Katie Frith, how to be an advocate with Tricia, and what the HAE International youngster’s community is all about with Henrik and Tony. They also worked on a poster project on what HAE means to them, which they presented to everyone at the end of day 1. A big thank you to Jess Bogoyevitch, who is part of the HAEi youngsters for facilitating and looking after the youngster’s group.
Day 2 we held a series of workshops on vein management – tips and tricks, being a parent of a child with HAE, patients only and carers only ‘hour of power’ – techniques to live well with HAE, and how to talk to your child about uncomfortable topics and feelings. These sessions were very well received and were facilitated by Nurse Kelly from Aesir Health, Dr Chris Bastian and Dr Maria Milic, who are both Clinical Psychologists.
We all had plenty of time to get to know each other during the BBQ dinner, and we had lots of fun during the afternoon Warners Bros. Movie World theme park.
Patients and carers from Australia and New Zealand attended, and we appreciate the great feedback we received for the conference. The HAE Australasia Board of Directors would like to thank everyone for their participation and for making the conference a great success.
HAE Australasia took part in the inaugural Australian Patient Organisation Network conference held over two days in Sydney in May. We are excited about the great initiatives, ongoing support, platforms, collaboration and repository of information programs that will be initiated by the Centre for Community Driven Research (CCDR). We look forward to greater outcomes for patients, carers and patient groups.
The 2019 hae day :-) was celebrated with one of our industry partners, CSL Behring. I was invited to share my personal story with HAE and to also speak about HAE Australasia and HAE International and how patients and carers benefit from having a dedicated patient group.