Australian youth at Congress

HFA was able to send 9 young people to attend WFH 2026 World Congress. It was great to see the group bond, attend sessions, ask questions and really take in the international experience.

They also took on a project of recording their experiences and interviewing other international Congress delegates. This gave some amazing insights into the range of experiences of people with bleeding disorders from around the world.

We are grateful to the sponsorship from CSL Behring and Sanofi, which enabled this to occur.

Youth Congress videos

You can watch the youth Congress videos on the HFA YouTube channel –
www.youtube.com/@haemophiliafoundationaustralia

Ben, VIC

The WFH 2026 World Congress was an incredible experience. I feel so lucky to have been chosen to explore this new place with new friends, and to connect with and learn from people with bleeding disorders from all over the world.

During the day before the Congress opening, all the youth got together and explored. We saw some of the sights, including the Petronas Towers and the Batu Caves, tried some of the food, and started getting to know the people we’d be spending the Congress with. It didn’t take long for us to form a close group, and by the time we got to the ‘get to know you’ session HFA had organised for us, we were already a group of people who knew each other well.

The next three days were sessions on a variety of topics split into several streams. These streams were Medical, People with Bleeding Disorders, Dental, Laboratory Sciences, Musculoskeletal, Nurses, Psychosocial, and Women and Girls with Bleeding Disorders.

One thing that I really appreciated about this year’s Congress was the increased focus on holistic health in the care of people with bleeding disorders. Sessions like ‘Wellness in people with bleeding disorders’ focused on the importance of mental health, diet, and exercise in quality of life, and particularly emphasised that we should build goals based on individual needs and abilities rather than perceived ideals. Then there were sessions like ‘the weight we carry: psychosocial realities of living with a bleeding disorder’ and ‘Identity and life stages in bleeding disorders’. These sessions had a wide range of relevant messages, including the importance of looking at the trauma bleeding disorders can cause in our lives (for people with bleeding disorders), their parents, siblings, and other members of our communities, and how the support we receive from these same people, locally and internationally, is vital. These sessions also carried the message that we should be a footnote in the story of our lives, not the headline.

I was also really happy to see the emphasis on women and girls with bleeding disorders, highlighting the additional needs and the gaps in care that affect women and girls in our global community. Sessions like ‘Empowering women and girls with bleeding disorders through shared decision-making’, highlighting the importance of women and girls having a voice in choices made around their health, ‘Menstrual health & heavy menstrual bleeding’, bringing up important conversations about the specific needs women have that have been neglected in the past, and even the inaugural plenary, where closing the gap in diagnosis of women and girls was highlighted as one of the major goals of WFH going forward.

One thought I can take away is how lucky we are in Australia, where we receive some of the best and most accessible care available. It can be confronting to walk around a Congress with healthy, functional legs and see some people with amputations, fused joints, limps, crutches or wheelchairs. The struggles some of these people go through every day are humbling and inspiring. These people would speak in sessions about their concerns and their struggles, but also their achievements and their hopes. These are the people of our international community, and they offer us an important reminder of where we have come from, and the work that is still ahead for us as a whole. I found there was a difficult line to balance in both acknowledging the privilege that many of us with bleeding disorders in Australia have, while also acknowledging that our system still has its faults that we can and should be striving to improve upon and advocate for people in our community.

Dev, SA

Attending the WFH 2026 World Congress in Kuala Lumpur wasn’t just an educational trip; it was a genuinely transformative experience. As an Australian Youth Delegate, stepping into the Kuala Lumpur Convention Centre alongside advocates from over 130 countries felt surreal. The energy was unmatched, proving that our community’s true strength lies in our global connection.

The Youth Meet & Greet: Kicking things off with the Aussie crew and our leaders, Ben and Alan, set the perfect collaborative tone for the week.

Shared realities: Swapping stories with international peers highlighted that while our backgrounds differ, our resilience and drive for better care are universal.

The scientific program was nothing short of mind-blowing, offering a glimpse into a radically advanced future for people with bleeding disorders.

Next-Gen therapies: Sessions diving into gene editing and non-factor therapies made it clear we are entering an exciting new era of medical care.

Holistic focus: It wasn’t just about the science. The psychosocial tracks validating the mental health realities of living with a bleeding disorder were deeply empowering.

Leaving Malaysia, I feel incredibly hyped for what is next. The WFH 2026 Congress didn’t just showcase medical breakthroughs, it equipped us as youth delegates to lead the charge back home.

Frazer, QLD

I wasn’t sure what to expect heading to Kuala Lumpur for the first time, especially for such an important event. Living with mild haemophilia A, I’ve always felt a bit on the edges of the bleeding disorders community. Mild means it could be worse, right? So do I really belong at something this big?

Turns out, absolutely yes, there were so many different people all the way from health care professionals, patients, some industry leaders etc. What struck me the most though was meeting others who actually come from completely different backgrounds yet have similar stories, or in some cases vastly more different which fascinated me. I feel like hearing those stories shifted something in me. This seriously was one of the most meaningful events I have ever attended.

Harrison, TAS

I have had limited opportunities to engage with HFA as an adult, so being selected as a youth delegate to attend the WFH World Congress was something I was eager to pursue. This year’s congress, held in Malaysia, was particularly meaningful for me as it combined professional learning with a chance to connect with my cultural heritage.

Over the three days of the Congress, I attended a range of sessions both clinical advancements and lived experiences. A key takeaway was gaining a broader understanding of how haemophilia and other bleeding disorders are managed globally. Listening to healthcare professionals discuss treatment approaches alongside personal stories from individuals living with these conditions highlighted the disparities in access to care, as well as the resilience of affected communities. These sessions reinforced how critical advocacy and education are in improving outcomes.

The session I found most impactful was the one focused on von Willebrand disease, as this is the condition I live with. This session explored emerging treatments currently in clinical trials, with nine new therapies in development. Given that treatment options have remained largely unchanged for many years, it was encouraging to learn about innovation in this space. Additionally, discussions around gene therapy were particularly insightful, outlining both current progress and future potential in transforming treatment outcomes.

Overall, the congress provided valuable insights into both the scientific advancements and the human side of bleeding disorders. It reinforced the importance of global collaboration, continued research, and advocacy to improve access to care and quality of life for those affected. Attending as a youth delegate also highlighted the importance of involving younger voices in these conversations.

Javonte, NSW

The WFH 2026 World Congress was my first international congress and one of the best experiences I’ve had so far.

What hit me most about the week was being around people who actually have haemophilia, or genuinely know about it. Where I’m from in Newcastle, I don’t know a single other person with haemophilia. So being in a venue with thousands of people who all understand what living with a bleeding disorder is actually like – whether they have it themselves, work in care, or are supporting someone in their family – was an amazing experience. It made things feel a lot less isolating.

The session that stood out most for me was a plenary on gene therapy in haemophilia. As someone with severe haemophilia A, it’s a treatment I’m personally interested in, so I wanted to actually understand what’s behind it instead of just hearing the term thrown around. The speakers took us through where the science is up to, going back to the first pre-clinical trials in the early 1990s. The basic idea is that with a single infusion, the body can be helped to produce its own factor VIII (8) or factor IX (9), ideally for life.

What I appreciated most was that the speakers didn’t just sell the upside. They were honest about the trade-offs. Gene therapy is irreversible, so it’s a bigger decision than starting or stopping a regular treatment. Results can vary from person to person, the body’s immune response can affect how well it works, and long-term safety data is still being collected. The numbers shared from long-term studies were promising, but not a guarantee.

For me, the real value of being there was leaving with a much clearer idea of what gene therapy actually involves and the questions I’d want to be asking if I ever consider it for myself. It’s the kind of thing you can read about online, but hearing it directly from the people doing the research, while sitting in a room full of others living with the same condition, made it land differently.

Khali, NSW

Attending the WFH 2026 World Congress in Malaysia was both an eye-opening and deeply personal experience. From the moment I arrived, I was struck not only by the scale and significance of the Congress but also by how welcoming and hospitable Malaysia was.

Across the sessions I attended, I was struck by the breadth of information shared and the strong emphasis on lived experience. The Congress created a space where clinical expertise and personal stories came together, offering a more complete understanding of what it means to live with these conditions.

One of the most engaging sessions I attended focused on rare bleeding disorders, including my own condition, Glanzmann thrombasthenia. As someone living with a rare disorder, it was incredibly validating to see conditions like mine given dedicated attention, something that is still all too uncommon in research and broader discussions. The session used case studies to explore real-life patient scenarios, emphasising the importance of detailed history-taking and truly individualised care. It reinforced how no two cases are the same, especially in rare disorders where variability is significant and clear clinical guidelines are often limited.

Another standout was the amount of discussion on women with bleeding disorders. We have moved from denying women access to a diagnosis, to almost every session I attended, discussed the impact on women in particular.

One of the most significant takeaways from the congress was a shift in perspective. Hearing about the challenges faced by individuals in different parts of the world made me reflect on how fortunate I am to have access to such strong healthcare support. I met someone from the USA who pays lots of money for a single dose, whereas in Australia I have access to an incredible nurse who can administer the treatment when needed, and I can also carry a dose with me at all times – completely free of charge.

At the same time, the message was clear: this isn’t something to feel guilty about, but something to use. It reinforced the importance of making the most of the care and opportunities available and focusing on achieving the best possible quality of life. But out of everything, the true highlight of my trip was finding not one, but two other amazing women living with Glanzmann thrombasthenia. We were able to openly share our symptoms, compare both common and different experiences, and talk through medications and treatment in a way that only people who truly understand can. It was incredibly meaningful, especially because I had never met anyone else with Glanzmann’s before. Beyond what we shared, we formed a genuine bond. I walked away feeling like I had gained lifelong sisters through this experience.

Overall, the congress was an incredibly enriching experience. It deepened my understanding of bleeding disorders, introduced me to new ideas and treatments, and, most importantly, connected me with a community that truly understands. I left feeling more informed, more empowered, and more motivated to continue advocating for awareness, support, and better outcomes for people living with bleeding disorders.

Louie, VIC

The WFH 2026 World Congress was an amazing experience that I will be forever grateful for.

I found rare bleeding disorders very interesting as someone with severe haemophilia A. I have never had to deal with people in my care team not knowing what my condition was or how to treat it. If someone did not know, it was quite easy for them to find out more information. Basically, everywhere I went, if someone had a general medical understanding, they knew what haemophilia was and how to treat it (for the most part). At the WFH Congress I learnt that there are many different factor deficiencies, in fact there are 13 different factors that people can be deficient in, with the rarest one (factor XIII) affecting 1 in 2 million!

Other rare bleeding disorders such as Glanzmann thrombasthenia and VWD (von Willebrand disease) may have less information and awareness, but in no way are they any less important, especially those that are incredibly disabling to patients. There are estimated to be more people with VWD than haemophilia in the world and on top of this I learnt that VWD has way less focus than haemophilia, with way less research articles being published each year.

The topic of women with bleeding disorders has been quite controversial throughout history for many different reasons. In today’s age we all should know, women can have bleeding disorders just like men, including haemophilia as well. At Congress I heard many stories of women not being taken seriously over their symptoms and being brushed off as just being a ‘symptomatic carrier’ which not only disregards them and disqualifies them for treatment, but it places an additional mental burden by labelling them as someone at fault, increasing their guilt for their situation. This coupled with the fact that iron deficiency due to increased menstrual bleeding can cause many other additional problems, can make for a very difficult time. The other important issue with this topic is the taboo and shame women can experience from discussing their symptoms particularly menstrual issues, and when a large portion of the world population live in countries with increased stigma and other discrimination towards women, it creates even more problems and sets us back as a whole to be honest.

I was quite emotional and distressed at first to see many people at Congress who were severely disabled, many of them people from developing countries. This is mainly due to joint damage caused by a lack of treatment leading to joint fusing (less movement in joints from bruising and bleeding). Here is a thought: There are 195 countries in the world, there are people with bleeding disorders in every single one of those countries, yet there were only 135 countries at WFH.

Other things that affect developing as well as developed countries are war, climate change and displacement. As of today, there are 130 armed conflicts around the world, and when these countries go to war they have to use more budget on military and less on medical development. On top of this, people with bleeding disorders are seen as burdens and often face difficulties when seeking refuge.

All in all, I had a very eye opening and informative visit to Malaysia, filled with many moments of friendliness and love.

Nikolas, VIC

My experience at Congress taught me a lot about my condition and how it can affect me and the people around me but it also taught me a lot about how it affects others, especially those who don’t have access to the same treatments and support I do in Australia. Congress taught me to be grateful. If it wasn’t for the treatment and support we receive in Australia, my life would have been completely different.

My favorite part about Congress was the talk on wellness in people with bleeding disorders. Throughout that session we heard from a number of people with lived and professional experience (some had both) and I learned so much about staying mentally and physically fit as a person with haemophilia even when you may be struggling with injuries and soreness.

My WFH experience was like no other and I’m so excited to bring back all my newfound knowledge to my friends and family at home.

Yamato, VIC

I have met some amazing new people within the bleeding disorders community at the WFH 2026 World Congress, from Australia and internationally.

My biggest takeaway from the Congress was seeing how people in less fortunate countries deal with their haemophilia, and it has opened my eyes to how grateful we should be coming from Australia. My whole life I was adequately treated and met with healthcare support – to the point where my connection to haemophilia felt almost non-existent, and seeing people limping and dragging their feet in pain to walk from place to place was really heartbreaking to see.

The Congress also had a lot of talks about women with bleeding disorders, which was something I was aware of, but not completely informed of prior to the congress.