Alan Dursun, HFA President, caught up with Suzanne O’Callaghan from HFA with his reflections on the WFH (World Federation of Hemophilia) 2026 World Congress and Global Youth Leadership Training.
Alan: It was my first ever Congress, so at the beginning it was a little overwhelming because of the number of people there. In some cases, particularly from less well-resourced settings like parts of Africa or Southeast Asia, it was really confronting hearing the experiences of people with bleeding disorders, doctors and other treatment providers in the different countries and how their services operate, as well as the treatment they have been given over the years and the results of that experience.
I was really aware that Australia is one of the lucky countries with our access to medication, treatment and support, and having HFA as our advocacy group.
There was such a big representation of Australians at Congress, including people with bleeding disorders, health professionals, the youth and everyone from HFA. I was very grateful for the opportunity to be there.
Alan: The sessions on advances in medications surprised me because there was not just one new type of treatment, there were a lot of different treatments. It’s good to see because it’s not just one size fits all.
Cedric Hermans spoke at our 2025 Conference in Brisbane and his presentations are always so good. His talk at Congress on AI was eye-opening, especially on how you can use this new technology. He also explained the limitations, that it can’t create new data and doesn’t know how to differentiate the value of some types of data. I can see that there’s a lot of potential, but I think we wouldn’t be able to rely heavily on AI in the near future. It’s more a tool for us to use for particular tasks. Privacy is a big issue. We need to know if the software we are using shares personal information with others and always keep this in mind when we use it.
Alan: In this Congress there was a big emphasis on inclusivity, on other bleeding disorders as well as haemophilia and on women and girls with bleeding disorders. They felt recognised and this meant a lot.
For example, when some of the WFH Youth Delegates went out one night, a few of us with haemophilia ended up with joint bleeds, including a young woman who got a knee bleed. The males had treatment product with them, so could just have their usual factor treatment. But the young woman didn’t have any factor treatment. We encouraged her to go to the Treatment Room at Congress. She came back later that day saying she had been given treatment and felt so much better: instead of being told she was a carrier and didn’t need treatment, she felt cared for and supported.
Alan: This is the second part of the WFH Youth Program. In the first stage in Dubai there were about 17 of us. In Malaysia we only had about 11 delegates for various reasons. Both the Youth Leadership Training and the NMO (National Member Organisation) Training were at the same hotel in Kuala Lumpur and we attended the same training sessions. This was a step in our program but not the final part. After this, there will be nominations for the WFH Youth Committee.
Alan: I think it was meeting all the members from the other NMOs and how in such a short time we were able to strategise and figure out the answers to the problems we were given. For example, at one table we had a case scenario on a governance issue. Prior to that I only knew one or two people on the table but by the end, we had swapped contacts and are still in contact now. We dealt with the task in a really constructive way and the instructor said we had a well-detailed response and had a good strategy for the problem.
Alan: The WFH General Assembly was held after the training before Congress started at the same Convention Centre as Congress. Once again it was my first experience of the General Assembly and it was fascinating to see how it worked. It reminded me of the United Nations with rows and rows of tables for all the countries that are members of WFH, with their flag and name of country. There were two seats for the official delegates from each country. Claudio Damiani, HFA Vice-President, was one delegate for Australia and I was the other. The existing WFH Board of Directors sat at the front.
The meeting was like any other Annual General Meeting, going through their financial reports and making motions on various items. Towards the end we had the Board nominations for the Vice-Presidency roles and two lay member positions. The elections were done electronically on our phones. We registered via a QR code and had one vote per country. We had discussed nomination preferences with HFA before the meeting and after we voted, the election results were displayed on the screen in front of us but voting was anonymous.
Alan: Yes, it was fantastic to see them all there and I caught up with them a couple of times. I’m still under 30 so I feel like I am on the fence with being a youth. It was good to see they were thinking about how to step up. Towards the end they were asking me about how I got my role as President and how one day they might get to be in those kinds of executive committee roles.
They were really engaged and wanted to go to sessions and understand more. I felt like they formed bonds that won’t ever fade away and be friends forever. They also did some activities together around Kuala Lumpur and had a good time – went shopping and to the Batu Caves.
They had to put together some recordings during Congress. At the beginning Tash, HFA Executive Director, and I met with them and I recorded them all. They all have different personalities and it was so lovely to see them being themselves. While they were at Congress they recorded interviews with other people with bleeding disorders there. I can’t wait to see how those all come together.
Alan: Firstly, it’s really important for them to be able to see how lucky we are living in Australia, especially compared to people with bleeding disorders from other countries. Even though we live quite far away from everyone, we get our medications with no cost to us, we have treatment providers at our doorstep, and programs to support us from HFA.
Another is for them to understand their condition and their treatment a bit more, the limitations and the pros and cons. For example, Dr Glenn Pierce was explaining the dosage for a new haemophilia B treatment and why it is different to emicizumab (Hemlibra®) for haemophilia A.
And forming friendships with people with bleeding disorders from other countries, where you can relate to each other’s experiences. In the rest of our life we are at school or work and usually the only person with a bleeding disorder. It’s good to have these friends and keep them close, so you can ask those questions about experiences like bleeds. I was really pleased that one of the youth delegates was able to meet someone else with her very rare bleeding disorder. I set out to find people for her and found two young women, one from America and one from the UK. They met up and I saw them together the next day, chatting. That was really good – it was one of her big goals that she has ticked off.
Alan Dursun was assisted by funding from WFH as a Youth Delegate to attend the WFH 2026 World Congress.
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