This story was originally published in National Haemophilia, No 224 December 2023.
The Melbourne Conference in August 2023 was the first time the national Conference had been held in person since the COVID-19 epidemic began. It was a great opportunity for young people with bleeding disorders to catch up with each other and hear the very latest information from the experts.
Adam, Alan and Cassie talked to HFA about their experiences.
Hi, we are Adam, Alan and Cassie and these are our thoughts about the Conference
What did you enjoy most about the conference?
Adam
I enjoyed seeing familiar faces, meeting new people outside of my state who have a bleeding disorder. Going to the Casino to celebrate a peer’s birthday, meeting the ‘old timers’ and learning about their journey. Being able to go off on my own and do my own thing in the Conference without a parent. I liked the coffee van with unlimited good coffee especially for the early morning sessions. Experiencing the hand simulator in the trade stands.
Alan
The best part of the Conference was meeting the new faces and learning more about the future treatments and technologies.
Cassie
I enjoyed meeting other people who have had similar experiences to me.
The best part was meeting new people who have similar experiences to me
What sessions did you find the most interesting and why?
Adam
The Gene Therapy session. It explained what gene therapy is and how testing in people with haemophilia has occurred in many countries around the world. Gave me information on what patients need to know before doing gene therapy. Key takeaways were the level of clinical trial follow-up required is a big commitment. Variability of results means success is not guaranteed. Possible risks some are major ones. The next wave of gene therapy will be non-viral, less toxic and gene therapy is rapidly evolving.
Alan
The majority of sessions in the last few conferences were centred around the males but this time I found the women’s bleeding disorders sessions quite fascinating especially when thinking of family planning and having a chance of a daughter being a carrier.
Cassie
I enjoyed both the VWD and Girls with Bleeding Disorders sessions the most. I found it helpful hearing from other people who have lived through similar experiences to me and who had insights into potential issues I may have in the future. Also hearing doctors talking about possible solutions.
The gene therapy session gave me information on what patients need to know before doing gene therapy
What message would you give to other young people about the Conference?
Adam
You have to experience at least one Conference as they really open your eyes to what is happening with bleeding disorders, and you get to listen to the medical specialists. You get to see the bigger picture. Not only that but you get to meet new people from all states who have a bleeding disorder and make new friends as well as catch up with peers you may not have seen for some time. Final message is you’re not alone and have a lot to look forward to. Your bleeding disorder doesn’t define you, you define it.
Alan
It is such a great opportunity to meet others with haemophilia, educate yourself and really bond/learn with/about others in the haemophilia community.
Cassie
Go! It’s definitely been worthwhile for me going to the conference, and hearing from and connecting with other people. The bleeding disorder community is great to be part of.
Go! Conferences really open your eyes to what is happening with bleeding disorders
Read more
You can read reports from the Conference in this issue of National Haemophilia.
Check out other personal stories from young people with bleeding disorders on:
- Factored In, the HFA youth website
- The HFA YouTube channel
