Conference reflections – a Foundation perspective

Alan Dursun, the new HFA President, and Gavin Finkelstein, the former HFA President, share their highlights and key take-aways from the Australian Bleeding Disorders Conference 2025.

What stood out for you at the Conference?

Alan: What stood out most for me was the sense of connection throughout the whole weekend. People were open, relaxed and willing to share their experiences, which made the conference feel warm and genuine.

Being around the youth again was a big highlight. Seeing them grow in confidence and take ownership of their stories reminded me why these events matter so much. I left feeling proud of the direction our community is moving in and excited about what is ahead.

Gavin: Right from the beginning, the first plenary set the tone for the Conference. It started with the history of bleeding disorders from Prof Alison Street, then the keynote presentation from Prof Cedric Hermans: a bit of humour and inclusiveness. Straight away people were engaged and involved with the theme of teamwork and pushing the boundaries and what was going on at the Conference. From there on the interaction between everyone was great. Overall, it was a very good and inclusive Conference.

What sessions were highlights for you?

Alan: One of the biggest highlights for me was Prof Cedric Hermans’ session. He explained the future of treatment in a way that felt clear, hopeful and grounded in real experience. His idea of aiming for a ‘haemophilia free mind’ stayed with me, because it showed how much progress has been made and how much more is possible.

I also really enjoyed the Men’s Breakfast. It was a space where we could speak honestly about haemophilia, expectations on men, mental health and all the things that do not always get spoken about. It was great reconnecting with familiar faces and meeting new ones.

I also got a lot from the youth and psychosocial sessions. They connected well with the work I was doing over the weekend and reminded me how important confidence and community are for young people stepping into leadership roles.

Gavin: I think people need to know the history and the first presentation brought that home. We are in a really good position now with treatment, but there are a lot more products that will become available and we will want the option of access to them in the future. We haven’t yet reached the best possible state with haemophilia and other bleeding disorders. The community needs to be aware that we will need to keep advocating for new treatments: we can’t be complacent and need to be involved or we may lose what we have.

The women’s plenary highlighted that the focus is more and more on equality. In the past it hasn’t been equal: there have been huge steps in that respect. Women with haemophilia are often misunderstood. They need to be empowered. So often they aren’t listened to, they get frustrated, they miss out on treatment and it affects their health. We need to change the understanding of women and haemophilia – it’s very important.

What were your take-away messages?

Alan: My main take-away message was the importance of combining lived experience with clinical knowledge. When both perspectives come together, the results are always stronger.

I also walked away with a deeper appreciation for youth leadership. When young people feel supported and included, they bring so much energy and direction to the community.

The whole weekend reminded me that connection, education and open communication are the things that keep our community moving forward.

Gavin: Complacency is a big fear of mine. Now you can adapt treatment to the patient and fit it to their lifestyle. Because of the changes to medicine, the impact of new treatments has been great. But people need to stay aware that they have a chronic medical condition.

But the atmosphere at the Conference was unique – credible and real – and that’s the beauty of working with our community because of the long-term nature of bleeding disorders.

It was also a great opportunity to reconnect with friends from many years ago – for example, I caught up with someone I met at the first youth event I attended in Melbourne many years ago. After the Conference we sat down and chatted for over an hour and it was just awesome. You build some fantastic relationships over your lifetime and even if you don’t see each other for 10 or 20 years or more, there is a great sense of connection.