Haemophilia Foundation Australia
Registered No.: A0012245M
ABN: 89 443 537 189
Street address: Greenwood Business Park, Building 1, Ground Floor, 301 Burwood Hwy, Burwood Victoria Australia 3125
Postal address: PO Box 2097, Burwood, Victoria. 3125
Tel: +61 3 9885 7800 hfaust@haemophilia.org.au www.haemophilia.org.au
Editor: Suzanne O’Callaghan
Read National Haemophilia online https://www.haemophilia.org.au/ national-haemophilia
The Damon Courtenay Memorial Endowment Fund (DCMEF) was established by Haemophilia Foundation Australia in 1994 with financial support from the late Bryce Courtenay and the late Benita Courtenay in memory of their son, Damon.
An amount of $10,000 is available for distribution. Applications will be considered on merit by a panel. There is no limit on the amount that you may apply for, however activities up to the amount of $2,000 are more likely to be successful.
Funding may be used for projects, services and/or care, or an activity aimed at improving the physical and emotional wellbeing and independence of recipient/s such as:
• medical appliances and equipment to help people live more independently
• career development
• training, education and coaching
• personal development
• conferences or workshops
• peer support activities/camps
The application form is available at www.haemophilia.org.au/DCMEF
Applications close 16 January 2026
Stock image: Akil Mazumder for Pexels
Alan Dursun President, Haemophilia Foundation Australia
Alan Dursun was elected HFA President at the HFA Annual General Meeting on 18 October 2025.
Hello, I am Alan and I have severe haemophilia A. I am from NSW and currently serve as Vice President on the HFNSW Committee. My family has been involved in the Foundation since I was a child, and the community has always played a central role in my life. This year I had the privilege of attending the WFH Youth Leadership Program in Dubai, and I now represent Australia on the international program.
I am passionate about strengthening our community through connection, leadership, and lived experience. I want people with bleeding disorders to feel supported from the moment they are diagnosed, through every stage of life. I’ve seen firsthand how much difference the right information, a strong network, and genuine belonging can make.
My goal as President is to help create a national environment where every individual and family feels heard, represented, and empowered. I care deeply about developing future leaders, supporting our youth, and ensuring our entire community continues to grow with confidence and unity.
HFA held its AGM on 18 October 2025 in Brisbane. David Fagan from Tasmania continues in his role as Treasurer. We also welcomed our new Vice President, Claudio Damiani from the ACT. Claudio has served on the HFA Council since 2016, and we are fortunate to have his experience and insight in this new leadership role. We also thank Dan Credazzi from NSW for his commitment and service as past Vice President.
We would like to acknowledge and thank outgoing HFA President Gavin Finkelstein for his dedication over the past 20 years, both to HFA Council and to the bleeding disorders community in Western Australia. Gavin has made an extraordinary contribution at every level and will continue in an advisory capacity to support ongoing projects.
The Australian Bleeding Disorders Conference, held from 16-18 October 2025, was a huge success. More than 230 participants attended including people with bleeding disorders, their families and carers, health professionals, policy makers, and industry partners.
Across two days, we heard 77 presentations from 59 speakers, covering new and emerging therapies, newly diagnosed, ageing, women and girls with bleeding disorders, youth, and many other important topics. The mix of clinicians, experts, and community members gave the conference depth, shared learning, and a strong sense of connection.
We thank our sponsorsGold: CSL Behring, Novo Nordisk, Roche and Sanofi; Silver: Pfizer and Takeda - for their ongoing support. And we thank all delegates for their participation. Conference presentations are available on the HFA website - www.haemophilia.org.au/conference-2025. >>
This year’s Bleeding Disorders Awareness Month was another standout. October brought our community together through walks, runs, storytelling, school activities, fundraising events, and daily efforts to raise awareness.
Our theme for 2025, Teamwork: Pushing the boundaries, really came to life. People of all ages across Australia contributed in their own way, reinforcing how powerful our community is when we come together with a shared purpose.
Thank you to everyone who took part.
HFA Office Administrator (part-time)
E: jbroadbent@haemophilia.org.au
T: 03 9885 7800
Hello! I’m Julia, and I’ve recently joined the HFA team as the Office Administrator. In addition to general administration, I’ll be supporting the team to continue delivering the high-quality programs and services that HFA is known for.
As we wrap up 2025, I want to thank you all for your support, your willingness to contribute, and your commitment to strengthening this community. I look forward to working with you in 2026 as we continue to build a strong, connected, and future-focused national foundation.
Wishing you a happy and safe festive season.
I previously worked for many years as the Communications Coordinator at Haemophilia Foundation Victoria (HFV), which has given me a strong foundation for this role. My time at HFVespecially connecting with families and members at camps and peer support events - has provided me with valuable insights into the lived experience of bleeding disorders. I understand the challenges people face at different stages of life, and I hope to use that knowledge to help support positive outcomes for our community.
The recent Australian Bleeding Disorders Conference reminded me just how unique and connected this community is. Bringing together people with bleeding disorders, their families, and health professionals under one umbrella creates such a powerful space for learning and support.
Outside of work, I enjoy staying active and being outdoors. I live by the beach and love walking my dog, swimming in the summer, and cold-water dipping in the winter. With my children now grown up, I’m also enjoying more time to relax, socialise, and catch up with family and friends.
It’s wonderful to be back working within the bleeding disorders community as part of such a passionate and dedicated team focused on advocacy, education, and support.
If you’d like to reach out to the HFA team but you’re unsure who to contact, feel free to email or call meI’d be happy to help.
The HFA Awards Program recognises special service to the bleeding disorders community. At the Australian Bleeding Disorders conference, the following awards were presented on the evening of the dinner.
Dr Bill McWhirter
Dr McWhirter served as the haematologist for many years at Royal Children’s and Royal Brisbane and Women’s Hospital. He was instrumental in formalising the organisation that is today known as Haemophilia Foundation Queensland and encouraging patients to join. The patients he helped in his time in that role would be countless, not to mention the support he showed families and loved ones during often difficult times.
Dr Simon Brown
We would like to formally recognise Dr Simon Brown for his exceptional long-term service to bleeding disorder patients and their families at the Queensland Children’s Hospital. As Director of Haemophilia at Queensland Children’s Hospital from 2007 to 2025,
Dr Brown has been a dedicated and compassionate leader, guiding numerous families through some of the most challenging periods in haemophilia care - particularly when access to treatment products was more limited.
Dr Brown has also played a pivotal role in education and mentorship, supporting the development of both medical and nursing staff within the Haematology team. His commitment extended beyond the hospital, with ongoing support for HFQ and HFA initiatives that have strengthened the bleeding disorders community across Queensland and nationally.
Although he stepped back from clinical practice this year to focus on laboratory work, his legacy continues to shape the care and culture of the Haemophilia Treatment Centre.
Lauren Green
Lauren has had a relationship with HFQ, HFA, and the bleeding disorders community since 1997.
In grade 2 she was fundraising at school to support her brother, who had been newly diagnosed. Lauren started as a member of the HFA youth committee from around 15 years of age and was also the HFQ youth board member from around 2008 and youth leader. She stepped away from the board around 2010 to focus on family commitments, though continued to volunteer and run events. In 2015 she rejoined the HFQ board and spent time as Secretary before taking on the HFQ Manager role in October 2022.
She has continued to demonstrate a life-long commitment to serving the bleeding disorders community both within Queensland and Australia-wide.
Joanna McCosker
Joanna is celebrating her 30th year of service as a nurse (and now Nurse Practitioner) with the Queensland Children’s Hospital (formerly Royal Children’s).
She has held the hands of many families as they navigated the scary times of a newly diagnosed child, first treatment, first bleed, the list goes on. She was instrumental in setting up the HTC model as it exists today and very passionate about girls and women not being labelled as ‘just a carrier’ and set up and run carrier clinics. She goes above and beyond to assist
in raising awareness of haemophilia in the broader community, as well as regularly attending HFQ and HFA events in her spare time.
Gene therapies are creating new hope for people with serious conditions like haemophilia. These treatments can be life-changing, but they also raise important questions: how should we pay for them, who should have access, and what happens when the long-term effects are still uncertain?
Between June and September 2024, researchers in a study led by the University of Sydney spoke to 87 Australians - including people living with blood
disorders, their carers, advocates, and members of the public. Using eight in-depth interviews and 15 focus groups, participants shared their views after watching an educational video on gene therapy and blood diseases. They were asked to reflect on four areas: what influences their decisions, the potential benefits and harms, barriers to access, and what still feels uncertain.
Five key themes emerged:
1. The patient context matters: Participants stressed that decisions should account for disease severity, life stage, prior treatments, and the lack of other effective options.
2. Access and fairness are critical: People highlighted barriers such as awareness, the role of clinicians in sharing information, travel distance, wait times, and the importance of person-centred care.
3. Hope and risks are both real: Many saw gene therapy as a chance to reduce symptoms or even cure disease, but they also worried about the unknown nature of side effects.
4. Costs spark debate: Views ranged from concern about the fairness of allocating scarce resources to recognition that gene therapy could save the health system money in the long term.
5. Uncertainty weighs heavily: The lack of longterm data on safety and effectiveness left many uneasy, with some worrying that better options might appear in future.
In Australia, bodies such as the Pharmaceutical Benefits Advisory Committee (PBAC) and the Medical Services Advisory Committee (MSAC) assess whether new treatments should be subsidised. Traditionally, this process looks at clinical safety, effectiveness, and cost-effectiveness.
This research, led by Professor Kirsten Howard and funded by the Medical Research Future Fund, is part of a national project called Development of a generalisable evaluation framework for high upfront-cost gene therapies. The project aims to build a framework that helps decision-makers weigh not just clinical and financial evidence, but also ethical, legal, and cultural dimensions—alongside patient and family perspectives.
Gene therapies are pushing health care into new territory. They bring hope, but also uncertainty and complexity. This study shows that Australians value not only medical results and costs, but also fairness, access, and the realities of living with disease.
By combining structured Health Technology Assessment (HTA) frameworks with consumer voices, Australia can make better, more accountable decisions that balance innovation with equity.
*Authors:
Amanda Rush, Maria Gomez, Kirsten Howard, Pippy Walker, Garry Lynch (The University of Sydney); Kristine Pierce (University of NSW); Richard De Abreu Lourenco, Rosalie Viney (University of Technology Sydney); Kylie Mason (Peter MacCallum Cancer Centre, The Royal Melbourne Hospital); Jo Watson (Pharmaceutical Benefits Advisory Committee).
HFA is a partner in this University of Sydney research project and is very grateful to the people and parents of children with haemophilia who participated in the focus groups and interviews, and the survey, which followed later.
Results from this research project were also presented as a poster at the Australian Bleeding Disorders Conference 2025. Rush A, et al. Patient, consumer and societal perceptions on high-cost gene therapies for haematological disorders.
You can view the poster at: www.haemophilia.org.au/conference-2025
October 2025 saw individuals, families, Haemophilia Treatment Centres, Haemophilia Foundations and other organisations coming together for Bleeding Disorders Awareness Month to raise awareness for haemophilia, von Willebrand disease (VWD) and other rare bleeding disorders. This year’s theme of TEAMWORK: PUSHING THE BOUNDARIES mirrored our Conference theme, encouraging everyone to come together to support people with bleeding disorders and raise awareness.
People walked, ran, shared stories and sold cupcakes all to support the members of our community. There were information desks at HTCs, red dress days, sausage sizzles, school education sessions, a trivia night and so much more. Thank you to everyone who ran events, including the state and territory Haemophilia Foundations. They were such wonderful opportunities for members to catch up and have a fun time out.
The last week of October was Red Week, with everyone going all out and dressing in red to help raise awareness.
Each Bleeding Disorders Awareness Month we run a colouring in competition for kids. It’s a fun way to get everyone involved, plus there are prizes for each age category! Children chose between three designs, red cake day, spooky and teamwork.
Category
children aged 5 to 8 years
Category
children aged 9 to 11 years
We love seeing the community come together for Bleeding Disorders Awareness Month. Thank you everyone for sending us so many photos – this is just a small sample of what went on.
World AIDS Day is marked globally on 1 December. In 2025 the theme is No one left behind
This is a day for Australians to pause and:
• show our support for people living with HIV
• raise awareness about prevention, treatment and care
• eliminate stigma and discrimination around HIV
• remember and honour the people we have lost to HIV.
It’s also an opportunity to tackle inequities in HIV prevention, testing, treatment and quality of life, both in Australia and internationally.
Wearing a red ribbon on World AIDS Day is one way people show their support.
HIV is a significant part of our history and continues to be part of our community’s experience. We are mindful of bleeding disorders community members in Australia who live with HIV, acquired through their treatment products in the early 1980s, before blood supply testing and HIV viral inactivation for manufactured blood products were introduced. We remember those who lost their lives to HIV and those who grieve for them.
No-one left behind calls us to action as a community every day, not just on the first of December each year.
How can we respond to the challenges experienced by our community members?
People with bleeding disorders who live with HIV face the challenge of living with a socially stigmatised chronic health condition, and with an experience that is unusual in the local HIV community – HIV acquired medically from treatment products, many heterosexual, and sometimes multiple members of the same family affected by HIV. They are often very private and may not tell many others about their HIV for fear of discrimination.
Community members grieving for loved ones who lost their life to HIV may wonder if their experiences and enduring pain are recognised. Those whose child with HIV was their only connection to the bleeding disorders community may be unsure if they still belong.
What kind of supportive environments can we create that enable:
• people with HIV to live free from stigma and discrimination?
• partners, families and carers to feel their HIV experience is acknowledged?
Some Foundations shared the strategies they follow in their general peer activities to support community members who may be affected by HIV.
At HFQ, we recognise how important it is to both appreciate how far we have come in terms of safe and effective treatments, whilst never forgetting the trauma and tragedy experienced by many in our community in the past.
We host monthly Men’s Support Lunches where the men have a safe space to share their common lived experiences and provide support to one another. We also installed a Memorial Plaque in 2024 to honour the members of our community who we have lost so they have somewhere peaceful and private to go and reflect and honour the memory of these members.
The Remembrance Service at the Australian Bleeding Disorders Conference is a special time to remember friends and family and the people we have cared for in the community who have passed away. HIV is a big part of that experience.
HFV is committed to respecting people’s privacy about HIV. Our men’s annual retreat is an example of a closed, safe space where men can connect and choose to open up about their journey.
‘Great to spend quality time with other guys dealing with similar issues. It can help to feel less alone. It helps to hear how others are managing and overcoming challenges,’ – HFV member
HFV isn’t an organisation exclusive to individuals with a bleeding disorder; we support families as a whole, and we recognise that their grief and loss may continue over time.
What’s different about HIV today in Australia?
• People living with HIV can get antiretroviral treatment that allows them to live a healthy, long life.
• This treatment can suppress their viral load, which means they have no risk of transmitting HIV to a sexual partner.
• People can take preventive medication that removes the risk of getting HIV through sexual activity.
• People can quickly access medications that prevent HIV infection if exposed to the virus.
• Australia has safer-sex initiatives and programs to reduce the risk of harm from injecting drugs.
• The risk of HIV infection through human blood products is now extremely low.
We are very aware that we are fortunate in Australia to have first-rate treatment and care for bleeding disorders provided at no cost to the patient. But World AIDS Day is also a reminder that many people with bleeding disorders in other countries do not have the same access to high quality HIV treatment and prevention. To find out more about global initiatives, visit the UNAIDS website - www.unaids.org.
Visit www.worldaidsday.org.au for more information about World AIDS Day in Australia. Conference remembrance candles HFV commemorative plaque
Download them from the HFA website https://tinyurl.com/GETs-factsheets
It is exciting times for bleeding disorders treatments, with several innovative new therapies in clinical trials or becoming available.
But what are they? How do they work?
And what are the potential benefits and risks?
HFA has published 4 new haemophilia therapy fact sheets that answer these questions and more – with diagrams!
• Clotting factor replacement therapy (explaining UHLs – ultra half-life therapies)
• Bispecific antibody therapy
• Rebalancing therapies
• Gene therapy
Our thanks to the AHCDO Gene and Emerging Therapies Sub-committee and our consumer review panel for their expert advice and suggestions.
• Via the order form on the website
• Or contact HFA on hfaust@haemophilia.org.au or 03 9885 7800
Ashley Fletcher
The Australian Haemophilia Centre Directors’ Organisation (AHCDO) offered funding through a Targeted Call for Research to address key knowledge gaps and urgent needs in bleeding disorders. Priority areas include improving diagnosis and understanding of von Willebrand disease, evaluating management practices, and identifying treatment and access disparities for people with bleeding disorders.
Revisiting Type 1 VWD classification in women with heavy menstrual bleeding: towards a better understanding of the phenotype –Professor Ross Baker ($25,000)
About half of women with heavy menstrual bleeding diagnosed with Type 1 von Willebrand disease (VWD) later show normal von Willebrand factor (VWF) levels, although the reasons are unclear. This study aims to better understand bleeding differences among these women by developing a specialised tool to assess heavy menstrual bleeding and related disorders, and by evaluating the usefulness of different VWF function tests. Improved classification of VWD will enable more precise research into biological mechanisms and support more tailored clinical care.
Understanding treatment preferences for haemophilia A treatment in paediatric patients: a Discrete Choice Experiment – Dr Elise Flynn ($25,000)
With multiple effective treatments now available for haemophilia A, decisions increasingly depend on what matters most to each patient and family, such as fewer injections or stronger bleed protection. Using a Discrete Choice Experiment (DCE), families will choose between structured treatment options, helping identify which factors drive their preferences. Findings will support more personalised treatment decisions, improve satisfaction, and enhance longterm health outcomes.
Reducing the impact of specimen transportprocessing artefact on diagnostic accuracy in von Willebrand disease in a statewide community-based pathology provider –Dr Jeremy Robertson ($17,600)
Blood samples collected in regional areas must often be transported to central laboratories for testing, and handling during transport can affect test accuracy. This study will assess different processing and transport methods to identify those that best preserve sample quality. Minimising impurities will improve diagnostic accuracy for von Willebrand disease and other bleeding disorders, reducing the risk of misdiagnosis or inappropriate treatment.
Ashley Fletcher is the AHCDO Australian Bleeding Disorders Registry (ABDR) Senior Research Fellow.
The Australian Bleeding Disorders Conference 2025 was held at the VOCO Brisbane from Thursday 16 to Saturday 18 October 2025.
The Conference brought together over 230 participants, including people with bleeding disorders, their partners and families, health professionals, government and industry.
The theme Teamwork – Pushing the boundaries was discussed throughout the program, highlighting the power of collaboration and working together for better health outcomes.
Over the 2 days we heard 77 presentations from 59 speakers - 5 plenary and 9 concurrent sessions with 14 session chairs. 15 posters were on display along with 7 exhibition booths. We socialised during the Welcome Reception, we reflected during the Remembrance Service and danced and celebrated awards at the Conference dinner.
We would like to thank all of those who contributed to and participated in the program, sponsored the event, and attended the sessions in Brisbane.
CATCH UP ON THE POSTERS AND PRESENTATIONS!
Posters and most presentation slides are now available on the HFA website.
‘I left with a warm heart and made some new friends and increased my knowledge and also my hope for the future.’
‘As a parent of a newly diagnosed child, it has validated our experience and made the experience less isolating.’
‘Speaking from personal experience and as part of the haemophilia community, it was incredible to contribute to a discussion that bridges lived experience with clinical expertise.’
‘Let’s keep advancing awareness, education, and collaboration - because every conversation brings us closer to stronger care and understanding.’
‘There’s something uniquely empowering about being in a room with people who truly understand your journey. Sharing stories, exchanging tips, and feeling that strong sense of unity was truly inspiring.’
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.
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.
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.
Shauna Adams
One of my key takeaways from conference this year was that I really felt like there was something for me in every session. Most of the presentations were inclusive of all bleeding disorders and people who live with them.
Von Willebrand disease
Chair ~ Dr Sam Hitchins
Patient story ~ Tyler
Diagnosis and bleeding assessment tools
~ Dr Sam Hitchins
Current and emerging therapies
~ Dr Stephanie P’ng
Your voice matters – encouraging self-advocacy for individuals with VWD
~ Monique Manzanera and Sophie
The session on von Willebrand disease (VWD) at this year’s conference was no exception to this: it was both educating and uplifting. It is positive to see that advancements to treatment options are on the horizon for people with VWD, something that has not been as much in the forefront in the past. I can’t wait to hear more about developments in this space.
I really enjoyed the patient stories from Tyler and Sophie. While they both had very different stories to tell, the common theme was the importance of self-advocacy in living the life you want to lead as a person with a bleeding disorder. It really is possible to do anything you set your mind to with the support of your Treatment Centre!
Shauna Adams is President, Haemophilia Foundation ACT and has VWD Type 3.
This is a transcript of Tyler’s presentation at the Australian Bleeding Disorders Conference 2025.
Hi everyone, my name is Tyler and I’m in my early 20s. Today I’ll be discussing my story as a young person with Type 1 von Willebrand disease.
From an early age it was apparent that I had bleeding characteristics that were unusual for someone of my age. Whether it was bruised legs from riding the bikes at daycare to bleeding noses that never seemed to stop.
It was apparent that there was something unusual. My next appointment with my paediatrician after my first day of daycare was where my diagnosis process starts. It was here that my first blood test occurred. Little did I know how many were to come. After the results from this blood test, an appointment was set up where I met an amazing haematology oncology nurse who would end up being the most positive influence throughout my bleeding journey.
When I was growing up as a young person with a bleeding disorder, I learned from a young age that I was able to still enjoy many of the sports and activities that many young people want to participate in –however, there were going to be precautions that I would have to take.
Whether it was soccer, Go-karts or basketball, my parents always ensured that I had all the necessary protective equipment and then some. This ranged from playing with a helmet when I played soccer to having additional protective equipment above what was required when racing.
Through being cautious I was still able to live my life to the fullest while ensuring that at all times my bleeding was taken care of. On top of these extra protective equipment items, I always carried my factor injections ensuring that even if something unforeseen occurred I was still able to treat my bleeding on the spot before proceeding to get any required medical attention.
As a young person with von Willebrands, I used to face struggles when getting medical attention. Limited awareness of the condition led to complications when visiting the GP. As such, I often found my mother and I explaining to the medical professionals what the condition was and how it affected me. This was especially challenging when GPs were reluctant to treat me out of fear of mistreating my condition.
However, as a young adult I have found myself visiting a variety of specialists and I’m pleased to say that I have noticed vast improvements when it comes to the awareness of the condition. Medical professionals are often aware of the condition and more informed on how to treat it.
I would like to finish my speech by acknowledging the incredible haematology team at my hospital - my haematologist and haematology nurse. The dedication and commitment that these two have provided has made my condition much more manageable. From learning to inject myself using a banana, to mitigating risks when it came to sport.
Having the same people watch me grow and develop has been a privilege. They gave me the ability to live my life without the bleeding disorder being a daily reminder of the things I couldn’t do. Instead, they gave me the confidence to do things I never thought possible. Without their contributions, I wouldn’t be who I am today. Thank you.
This is a transcript of Sophie’s presentation at the Australian Bleeding Disorders Conference 2025.
Living with von Willebrand disease (VWD) type 1 has shown me that the most powerful advocacy tool is knowledge. Today I want to share my story and how understanding myself, my choices, my emotions, and my support system shaped the care that was right for me (particularly during my pregnancy journey).
Before I begin, I want to recognise that my story is just one experience. Not everyone has a diagnosis before pregnancy, and not everyone has had the positive support I have been fortunate enough to receive. I hope we also hear those stories as well, throughout this conference and beyond.
I once assumed getting my wisdom teeth removed at 20 was going to be a non-event. The only preparation I had done was to ensure my freezer was stocked full of ice cream. Going into the surgery, as I counted down from 10 to the anaesthetist, I imagined waking up to someone telling me it was all done.
But instead, I woke up choking on a mouthful of blood, to a theatre full of panicked faces, and someone telling me they were going to have to put me back under as something was not right. In hindsight, I’ve realised they had thought the operation was finished, so had intentionally started to wake me up, only to realise I was losing too much blood. But the experience for me felt a little akin to a horror movie where the anaesthetics go wrong and you wake up in the middle of the operation.
~Two litres of lost blood, an emergency trip to the ICU, blood and iron transfusions, a month-long recovery, and a very traumatised dentist later, I was eventually diagnosed with von Willebrand disease, and my sister was diagnosed shortly after. Prior to this, we had both had relatively minor presentations, so nobody had ever put it all together. Although in hindsight, there were probably some signs:
• It turns out it is not normal to be pulled aside by a teacher worried about abuse at home because of the bruises and a black eye after a week’s skiing holiday,
• Or be worried about period leakage during a two hour school exam,
• Or to have bleeding gums prior to a first date because the nail-biting nerves got the better of me,
• Or in my sister’s case, to have fingerprint bruises after one of her friends hugged her too eagerly.
These symptoms were not easy to piece together, and there was no perfect ‘aha moment’ that I or my family missed. Instead, there were a collection of ‘hmm, that seems odd’ moments, often followed by hesitation about raising them.
Even my mum, who is a GP, felt it was not her place to push when a dentist dismissed her concerns that my sister’s two-day episode of bleeding after a tooth removal years earlier did not seem right. And if a GP in ‘mum mode’ can feel hesitant to advocate strongly for unusual symptoms, then we clearly have a long way to go. Self-advocacy often starts with understanding your symptoms, trusting your instincts, and being persistent in seeking answers when things do not add up.
More than ten years after the ‘wisdom tooth debacle’, von Willebrands was not a big part of my life. I had medication to manage it if needed, and it was not until I decided to start a family that I realised I still had a lot to learn about what it might mean for me and my family.
• A big (and pleasantly surprising) learning for me was that I still had a number of options available during pregnancy despite the bleeding disorder. So please don’t let anyone tell you there is only one approach.
• The other thing I learnt was that it is important to do your own research as well. To be clear, I am not suggesting you ignore medical advice and instead rely on Dr Google. But there is a range of other quality resources out there for your benefit such as - the Haemophilia Foundation’s online resources, speaking or reading about others’ experiences... I also attended the hospital’s pregnancy classes. My research equipped me with the right questions to ask my healthcare team. By the time I got to the birth, I was confident about my available choices and their risks, the experience to expect, and the possible decisions I might need to make.
I made the personal decision to have a planned caesarean. It helped to avoid the use of instruments such as the vacuum device, which has a small brain bleed risk to my son, or a larger risk if he had inherited the condition. It also allowed us to plan when I would have the relevant clotting factor concentrate medication to help avoid pre- and postbirth bleeding. I was lucky that my healthcare team were incredible in giving me the full pros and cons list of this decision but ultimately supporting me in it.
Despite the joking way I often talk about the ‘wisdom teeth debacle’, there were a lot of heightened anxieties that I had about birth and pregnancy in general. I think the previous hospital experience left a bit of trauma, and it was important to recognise this and process it prior to the birth. It was also critical to let those around me know about these anxieties. My support system was pivotal in helping me manage them. My husband, family, and friends played a major role, and so did the medical team, including those in the room during the caesarean. If you are a medical professional, please validate and treat these concerns seriously, even if they seem minor.
Luckily for me, the healthcare team did take my concerns seriously, even when met with my ‘it is probably nothing but…’ statements. From the midwife who literally held my hand in the moments my partner was not allowed to be in the room, to the anaesthetist who stepped me through every stage, to the obstetrician who even supported my desire to play music during the surgery.
Birth is a full-on experience for anyone, and I am thankful to the team for helping me manage those anxieties and previous trauma, and proud of myself for understanding my emotions and, through my support system, advocating for what I needed.
Monique, the other presenter, and I have been discussing the importance of self-advocacy. But I also want to acknowledge the role that systems play in creating a culture where it is easier for patients to advocate for what they need.
Hospitals are complicated, systems are clunky and adding a haematologist to the long list of professionals and processes involved in a birth can make things more difficult. I had an extremely positive experience in the lead up to my birth in the public system at my Haemophilia Treatment Centre hospital. I had a singular point of contact in my specialist midwife, who had experience with bleeding disorders and a close working relationship with my haematologist.
In an unfortunate tale of two cities, my sister gave birth two years before me in another capital city, and her experience was not the same. She found herself running around the hospital trying to reconcile what the various midwives, obstetricians, haematologist, and anaesthetist were saying, and they were saying slightly different things. It was a logistical and emotional nightmare, and it ultimately impacted her care. My sister could not believe it when I told her that I had a meeting with my midwife and haematologist in the same room prior to the birth.
So, to the healthcare professionals in the room, please keep finding ways to make patients the centre of care – and consistency of care, and co-ordinated multi-disciplinary care are critical factors.
I am pleased to report that I am on the other side of my pregnancy journey, with a very cute one year old baby boy. We recently found out that our son has not inherited the disorder, so the advocacy I began for him during my pregnancy can now be focused on supporting others in my family, in our community, and on continuing to advocate for myself.
Regardless of the journey you are on, whether you are advocating for yourself or a family member, I encourage you to start by understanding your symptoms, your choices, your emotions, and your support system. Please know that you are empowered to make choices, and your emotions should never be dismissed or underestimated.
And if you are a healthcare professional supporting someone with a bleeding disorder, please continue to provide the tools to make these decisions and advocate for what they need, please do not dismiss the additional emotions a bleeding disorder can bring, and please talk to each other.
Suzanne O’Callaghan
Women and bleeding disorders
Chair ~ A/Prof Jenny Curnow
Patient perspectives – stage of life
~ 4 women of different ages
Is the female revolution in hemophilia care and treatment underway
~ Prof Cedric Hermans
Women and bleeding disorders
~ A/Prof Jenny Curnow
Panel discussion and Q&A
~ panel joined by Monique Manzanera
The plenary on women and girls with bleeding disorders at the Australian Bleeding Disorders Conference brought together 4 women from different age groups, international expert Prof Cedric Hermans and Australian expert Assoc Prof Jenny Curnow to explore a female-centric approach to treatment and care over the lifetime.
Opening the plenary, the stories from the 4 women were powerful accounts of the challenges they had experienced - from being a young woman trying to manage bleeding at school and work with bruises, nosebleeds and very heavy periods, through pregnancy and childbirth and to dealing with medical procedures and heavy menstrual bleeding during peri-menopause. One woman also spoke about the variety of issues for her 3 young daughters, one who has normal factor levels, while the others have low factor levels and have required treatment.
The importance of self-advocacy on the journey to diagnosis and effective treatment was a common theme: at times their symptoms had been dismissed by health professionals and their status described as ‘just a carrier’; strategies to facilitate liaison between their Haemophilia Treatment Centre (HTC) and other health care providers were key.
There is an international effort to rethink clinical management of women and girls with bleeding disorders and Prof Cedric Hermans took the audience through his thought-provoking proposal for a female-centric approach in haemophilia.
Proactive and systematic diagnosis is the first step:
• Identifying haemophilia carriers in families with haemophilia
• Investigating bleeding disorders in females with unusual bleeding tendencies
• Further investigation when a female has bleeding from an unknown cause
• Adding females to bleeding disorders registries such as the Australian Bleeding Disorders Registry (ABDR).
This work has already begun in Australian HTCs, but he challenged the audience with ‘can we do better?’
Approximately one third of females who are haemophilia carriers have bleeding symptoms. While most have mild haemophilia, there is a group with normal factor levels who have a bleeding phenotype and also have bleeding symptoms. Recently this group has been classified formally as ‘symptomatic haemophilia carriers’.
European research studies have confirmed that both females and males with mild haemophilia have similar types of bleeding episodes, with females also experiencing problems such as heavy menstrual bleeding and post-partum haemorrhage (after childbirth). However, females have often been diagnosed later than males and with higher factor levels as a trigger for diagnosis. Like males with mild haemophilia, females with mild haemophilia can also experience joint damage.
Cedric Hermans proposed that women and girls with haemophilia should receive similar care to males with haemophilia, but with specific clinics for females.
He argued that females should have access to innovative treatments, which will involve enrolling females - and males with mild haemophilia – in clinical trials. However, the females’ types of treatment could be different to males: increasing the effectiveness of their body’s factor VIII (8) or factor IX (9) rather than supplementing with additional factor.
Ultimately this could mean that females as well as males could live with a ‘haemophilia-free mind’.
What about other bleeding disorders in females? Assoc Prof Jenny Curnow took a deep dive into the approaches to care in women and girls with von Willebrand disease (VWD) – from menarche to menopause.
Although VWD is the most common bleeding disorder, diagnosis is challenging. Overdiagnosis, underdiagnosis, misdiagnosis (wrong type) is common. Using a standard Bleeding Assessment Tool such as the ISTH-BAT is valuable for assessing symptoms objectively. Laboratory testing and results are affected by multiple factors – including the body’s own reactions to age, hormone treatments, pregnancy and trauma, and blood type.
Heavy menstrual bleeding (HMB) is the most common symptom of a bleeding disorder in females. But what is HEAVY menstrual bleeding?
• More than 80mls blood per cycle (1/3 cup)
• Soaking through super tampons or pads every 2 hours or less
• Flooding the bed
• Clots larger than 50 cent piece
• Low ferritin (iron stores)
• Periods lasting more than 8 days
• Interferes with school, work, social activities –bleeding, pain, midcycle pain.
What work is underway to help identify women and girls with heavy menstrual bleeding who may need further investigation for a bleeding disorder? Jenny Curnow highlighted a couple of innovative projects:
• Let’s Talk Period (letstalkperiod.ca) – Canadian haematologist Dr Paula James’ online survey for women, a self-administered bleeding assessment tool (Self-BAT). It provides a bleeding score indicating if the women’s symptoms suggest a bleeding disorder.
• An Australian study to develop an app targeted at patients and GPs to select out the females who need further investigation.
How can VWD impact over a woman’s lifetime?
• Iron deficiency (anaemia)
• Increased likelihood of ovarian cysts, endometriosis, fibroids
• May be complications in early pregnancy
• Need care as a ‘high risk pregnancy’ with support from the HTC during pregnancy and before, during and after delivery
• Getting older? Women need HTC support for medical procedures and surgery
• And for treatment decisions in older women –don’t rely on von Willebrand factor (VWF) levels, which may increase with age – instead focus on the woman’s bleeding history.
And if you thought there were no new treatments for VWD, you were in for a surprise! Jenny Curnow showed a long list of innovative new therapies under development, with some clinical trials commencing in NSW, Victoria and WA. Females are encouraged to participate (speak to your HTC if you are interested).
By the end of the session we had thoroughly explored the conference theme of pushing the boundaries –with great hope for a future where a female-centric approach to treatment and care is the norm.
Suzanne O’Callaghan is HFA Policy Research and Education Manager
HFA had the opportunity to interview Prof Cedric Hermans during the Australian Bleeding Disorders Conference 2025.
Prof Hermans, from Saint-Luc University Hospital, Belgium, was a keynote speaker at the Conference and spoke with us on a variety of topics, including:
• The changing landscape of treatment options for haemophilia and other bleeding disorders
• Women and girls with bleeding disorders
• The importance of diagnosis for people with bleeding disorders.
‘Things are changing. And the good news is that patients can now be on prophylaxis and what we expect is to have zero bleeds in all patients and a normal life, physically and mentally.’
WATCH THE VIDEO
And read the transcript! https://tinyurl.com/HFA-cedric-H
Laura Bardell
Chair ~ Dr Gianna Pastore
How important is it to connect? ~ Laura Bardell
Let’s talk about piercings, tattoos and even Botox ~ Steve Matthews
Complementary therapies in bleeding disorders: evidence for use, mechanism of action and relative risk ~ Cameron Cramey
A potential role for hypnosis in patients with haemophilia ~ Dr Vidya Limaye
Diets and weight management, and maintaining a healthy weight ~ Michael Wilson
Navigating the world: travelling with a bleeding disorder and partnering with your HTC ~ Megan Walsh
The Lifestyle plenary at the Australian Bleeding Disorders Conference, chaired by Dr Gianna Pastore, reflected this year’s conference theme of teamwork, highlighting how collaboration, connection, and shared responsibility can empower people with bleeding disorders to live well.
The session opened with counsellor Laura Bardell leading a discussion on the vital role of connection and practical ways to foster stronger links within local communities, emphasising how shared experiences and support can make a lasting difference in people’s lives.
Nurse Steven Matthews followed with a lively and practical conversation about piercings, tattoos, and Botox, emphasising the value of working closely with your Haemophilia Treatment Centre (HTC) teams to make safe and informed decisions.
Physiotherapist Cameron Cramey explored complementary therapies such as acupuncture, dry needling, yoga, and cupping, emphasising the value of working with trusted practitioners to achieve the best outcomes.
Dr Vidya Limaye shared compelling insights into the use of hypnosis for pain and anxiety management for those with bleeding disorders, drawing from her experience in her hypnosis clinic within the rheumatology unit at the Royal Adelaide Hospital.
Dietitian Michael Wilson encouraged a balanced ‘everything in moderation’ approach to nutrition, while addressing misconceptions about body image and weight and highlighting the importance of recognising that BMI (Body Mass Index) is not always an accurate reflection of overall health and the role dietitians can play in a multi-disciplinary team.
The session concluded with nurse Megan Walsh underscoring the importance of teamwork when travelling, encouraging individuals to partner closely with their HTC to ensure ongoing care and safety.
Together, the speakers reminded us that living with a bleeding disorder is not about limitations, but about collaboration, confidence, connection and building a lifestyle that supports both health and happiness.
Laura Bardell is a registered counsellor working with HFACT and a former midwife.
Monique Manzanera
Chair ~ Dr Liane Khoo
What now? I’m still here: navigating ageing with a bleeding disorder ~ Dr Liane Khoo
Patient story ~ Neill
Getting to the heart of the matter –cardiovascular issues in people with bleeding disorders ~ Dr Caroline Dix
HIV, hepatitis C and liver health – changing the focus for an ageing population
~ A/Prof Krispin Hajkowicz
Preparing for future needs
~ Yu-Hsuan (Yoshi) Lin
General panel discussion and Q&A
~ panel joined by Penny McCarthy
Dr Liane Khoo opened the Getting Older session with an insightful overview of ageing with a bleeding disorder, introducing attendees to the concept of GOAT – Getting Older and keeping Active and Terrific!
She reminded us that age is not a barrier to achievement and highlighted the importance of adaptability and expanding multidisciplinary care in supporting people as they age. Her presentation set the tone for an important discussion on the unique challenges faced by the ageing bleeding disorders community, including staying active, building trust with care teams, and seeking support when needed.
The session continued with a moving personal story shared by Neill, who spoke candidly about his experience ageing with haemophilia. He emphasized the value of regular check-ups with
GPs and specialists, maintaining a healthy lifestyle, and adapting to changes in treatment. Neill shared how newer therapies - particularly emicizumab (Hemlibra®) - have been life-changing for him.
Next, Dr Caroline Dix presented Getting to the Heart of the Matter, which focused on cardiovascular health in people with haemophilia. She discussed the increased risk of heart disease and stressed the importance of preventative care. Dr Dix highlighted that, thanks to significant advances in haemophilia treatment over the past 50 years, people with bleeding disorders are living longer - making health promotion and disease prevention more important than ever.
Associate Professor Krispin Hajkowicz then addressed HIV, hepatitis C, and liver health, shifting the focus to issues affecting an ageing population. He discussed lifestyle interventions, harm reduction strategies, emerging therapies, and future directions in liver care – offering both guidance and hope for ongoing management.
The session concluded with Yu-hsuan (Yoshi) Lin, who spoke on preparing for future needs. Yoshi addressed chronic joint damage and its impact on independence, falls prevention, social isolation, the psychological burden of chronic illness, and the natural stressors of ageing. She left the audience with a powerful message about the importance of living longer, fuller, and more connected lives.
Monique Manzanera is Haemophilia Social Worker at the Royal Prince Alfred Hospital, Sydney, NSW.
Yuhsuan Lin (Yoshi)
The Australian Bleeding Disorders Conference 2025 brought together passionate nurses, doctors, patients, and advocates from around the country to share knowledge, celebrate achievements, and look ahead to the future of care for people living with bleeding disorders.
Being part of the organising committee for this year’s Conference was a real privilege, and I was honoured to receive a Certificate of Appreciation during the conference dinner. But the real highlight was seeing the community come together - patients, families, nurses, doctors, and researchers all under one roof, learning and supporting one another.
This year’s Conference shone a spotlight on the experiences of women and girls with bleeding disorders, a group that has been historically under-recognised. Sessions focused on increasing awareness, encouraging self-advocacy, and improving access to care.
Another major theme was ageing with haemophilia. As people with haemophilia live longer, we’re seeing a shift in their health needs. Bleeding remains a concern, but more and more, the focus is on managing chronic health conditions like heart disease, diabetes, arthritis, and chronic pain. Falls prevention, pain management, and working with community health services are becoming increasingly important parts of the care puzzle. This raised the question of if we have an adequate multidisciplinary (MDT) approach to accommodate this generation facing challenges of haemophilia, which can complicate other medical conditions. We heard from two South Australian patients who shared powerful personal stories – one on receiving gene therapy, and the other on growing older with haemophilia. Their experiences were heartfelt and really drove home the importance of listening to our patients and learning from their journeys.
In both the mild disorder and lifestyle sessions there was a focus on managing minor procedures, where prolonged bleeding continues to be an issue. Better communication from patients and health care professionals for pre- and post-procedure planning is encouraged.
The lifestyle plenary was fun and engaging, and looked at topics like body art, hypnosis, and complementary therapies, along with practical travel tips for people living with bleeding disorders.
We also had the honour of celebrating two giants in our community - Dr Simon Brown and Nurse Practitioner Jo McCosker - for their incredible 30 plus years of work in haemophilia care. Their dedication has shaped how we practise today, and it was wonderful to see them recognised.
Reflecting on the Conference, I feel incredibly grateful for the healthcare system we have here in Australia. Our patients have access to advanced therapies, a dedicated care team, and a strong support network.
But we were also reminded of a sobering truth that around 75% of people globally with haemophilia or bleeding disorders still don’t have access to the care or treatment they need. That’s a staggering number. It’s a call to action for all of us to support humanitarian efforts and continue raising awareness, both at home and internationally.
These gatherings are a reminder of how far we’ve come - and how much more we can do when we work together. Whether it’s through new therapies, patient education, or simply sharing stories, every small step brings us closer to a more equitable, compassionate, and empowered future for all people with bleeding disorders.
Yuhsuan Lin (Yoshi) is Haemophilia Nurse Consultant at the Royal Adelaide Hospital, South Australia.
Juana Chokvareeporn and Ellie Papantoniou
Juana Chokvareeporn
The Australian Bleeding Disorders Conference 2025 in Brisbane brought together experts, clinicians, patients, and families to share the latest insights and innovations shaping the future of bleeding disorders care. As a Physiotherapist from New Zealand attending my first bleeding disorders conference, it was a wonderful opportunity to connect and learn from each other’s perspectives. I gained new insights in management of bleeding disorders and a renewed appreciation of how teamwork can transform lives.
diagnostics
Traditionally, haemophilia has been seen as a ‘maleonly’ condition and women with other bleeding disorders have often been unrecognised. However, new perspectives and advanced diagnostic tools are reshaping that narrative. Early diagnosis and screening programs now increasingly include females - carriers and symptomatic women - who may have been underdiagnosed or overlooked in the past. These advances mark a crucial step toward equity in care, ensuring that all individuals affected by bleeding disorders receive timely recognition and support.
Treatment as prevention –A transformative shift
Novel therapies are changing lives by transforming bleeding disorders management with very effective prevention. Extended half-life factor products, nonfactor replacement therapies, and gene therapies are enabling people with bleeding disorders to live more normalized lives - free to participate in sports,
work, and social activities with confidence. While older generations faced challenges such as multiple joint bleeds and long-term joint damage, today’s innovations are preventing such complications from the start. This remarkable progress underscores how far the field has come - and how important continued research and access to care remain.
Bleeding disorders care brings together a multidisciplinary team - haematologists, physiotherapists, nurses, social workers and psychologists - working collaboratively to deliver holistic, patient-centred support.
• For children, the focus is on creating safe environments that build confidence, independence, and a sense of normalcy.
• For young adults, it’s about empowerment— pursuing higher levels of activity, education, and career goals without limitations.
• For the ageing population, care centres on managing pain, arthritis, and muscle atrophy while preserving quality of life.
This generation-tailored approach reflects the evolution of bleeding disorders care - from survival to thriving, from isolation to inclusion.
As science continues to advance, so too does our vision of what it means to live with a bleeding disorder. The Conference highlighted not only groundbreaking medical progress but also a collective commitment to community, equity, and hope for future generations. Together, we are moving towards a future where early diagnosis, prevention, teamwork and shared decision care redefine what’s possible for everyone affected by bleeding disorder. I would highly recommend this Conference to anyone who has or is involved in bleeding disorders management. It is an invaluable experience for learning, collaboration and inspiration.
Ellie Papantoniou
The 2025 annual meeting was an invaluable opportunity for Physiotherapists from Australia and New Zealand to share insights, experiences and collaborate. It was a great opportunity to come together as new and experienced clinicians discussed cases, service delivery and new research.
As a relatively new Physiotherapist in this space, I gained a wealth of knowledge from meeting with this group. Their knowledge, passion and dedication are profound, and it was inspiring to see how this makes a significant impact on the lives and wellbeing of their clients. A key message for me was how despite advancements in the medical management of bleeding disorders, being proactive about bone and muscle health is an imperative element of the health of people living with bleeding disorders.
We were lucky enough to also have a guest speaker present to the Group: Dr Sally Hess, a consultant Physiotherapist and an expert in the assessment and management of the shoulder. Her presentation unveiled how to simplify the assessment and management of the shoulder joint, which clinicians often associate with complexity.
Dr Hess enabled the Group to challenge their thinking relating to exercise dosage, the risk of muscle atrophy and we even had a chance to put our new knowledge into practice with some effective shoulder exercises! Further to this, it was great for the sharing of knowledge to be reciprocal, as the physiotherapists shared with Dr Hess, their own experiences of managing shoulder pathologies in people living with bleeding disorders.
In the final session of the meeting, the physiotherapists, nurses and psychosocial teams joined to learn about horizon therapies and discuss the importance of the multidisciplinary team and a coordinated approach to the care of people with bleeding disorders.
The ANZHPG were incredibly grateful for the opportunity to meet in Brisbane, and we look forward to continuing our collaboration and growth as clinicians at the next one!
Juana Chokvareeporn is Physiotherapist at Health New Zealand Waikato, Hamilton, New Zealand Ellie Papantoniou is Physiotherapist at the Royal Children’s Hospital, Melbourne, Australia.
Alan and Ben
Alan Dursun and Ben Inglis organised and led the Youth Program for the Conference, which included activities like rock climbing, a youth lunch and dinner and a booth at the Conference where youth delegates paired up to share their stories on a Stick Your Story board. They also produced a video that was showcased at the Conference Dinner on What do you want people to know about living with a bleeding disorder? The Conference itself had a special session aimed at young people, chaired by Haemophilia Nurse, Jamie Chase, called Youth – my amazing bleed story! – with a panel discussing some tall stories about bleeds from young people, and voting on whether they were true or fake.
Ben and Alan talked to HFA about the aims of the Youth Program and the satisfaction they had at seeing the youth delegates connecting and enjoying their time together.
Some of the youth delegates shared their personal highlights with us.
Hi, we’re Alan and Ben. We have haemophilia and we are Haemophilia Foundation youth leaders.
What was the aim of the Youth Program at the Conference?
Alan
The youth program was created to bring the young people together, build their confidence and give them a comfortable space to express themselves. The aim was to help them connect, learn from each other and start stepping into their own leadership roles. We mixed fun activities with moments where they could share, reflect and work as a team, and the goal was for them to walk away feeling more empowered and more aware of their potential in the bleeding disorders community. My highlight was seeing how quickly the group bonded. Once they relaxed, the energy completely shifted and they started supporting each other and opening up. Watching them work on the video activity was the standout. They were creative, honest and confident, and it showed how strong this next generation is. Seeing that level of growth in such a short time was genuinely the best part of the whole program.
I always find the youth programming for haemophilia events to be so important for the future success of our organisations. From very early in our childhoods, there are those among us in the community who have built incredible supportive connections with others who perfectly understand the struggles and situations we deal with. That’s a powerful thing.
Ensuring that the passion we learn in our early years continues to be encouraged and nurtured as we become the adults we will be for the rest of our lives is so important for the future of this community we all love.
With this in mind, my main goal for youth programming is empowering our youth members to want to be a part of building future programs for themselves.
To reach this goal, we aimed to design a program that would create community within our group of youth attendees, and show how rewarding and fun being part of our youth programs can be.
Through our efforts as organisers, and of course the efforts of all our youth attendees, I think we were quite successful in reaching this goal.
While my personal favourite activity was the rock climbing, without a doubt my highlight was seeing the youth attendees seeking each other out and spending time together throughout the conference, regardless of whether they’d first met as kids, or earlier that day.
If the youth we have coming up through our community are as caring, driven and fun-loving as those we had at the national conference this year, then I have no doubt that the bleeding disorders community will be in good hands for years to come.
Youth delegates share their highlights
‘My highlight was meeting new friendly faces who have had the courage to join the community, learning more about haemophilia that I wasn’t aware of, learning what and how far our research has come to.’
‘My highlight was hearing everyone’s different experiences dealing with haemophilia and also being able to relate to others.’
‘My highlights of the youth program at the conference to start with is definitely meeting new people - making connections with people who are in the same position and the same age bracket as you helps so much with dealing with the disorder.
Having the youth program at the conference made it ten times more enjoyable.
Having the rock climbing was a great ice breaker and really brought everyone together straight away, which really helped everyone build a connection with each other.
I also really enjoyed being able to have a room just for the youth. I found it made our group more personal and we could have some down time and discuss on how the seminars went.
Overall, I’d say having the youth group at the conference was an awesome experience.’
‘I really enjoyed the HFA youth program. I got to meet people from all across Australia, try outdoor rock climbing, and even go out for a night on the town after the conference dinner. It was a great mix of activities and a really fun couple of days.’
World Haemophilia Day
17 April 2026
wfh.org/world-hemophilia-day
WFH World Congress 2026
Kuala Lumpur, Malaysia
19-22 April 2026
wfh.org/congress
Bleeding Disorders Awareness Month October 2026
www.haemophilia.org.au/BDAM
Haemophilia Foundation Australia (HFA) acknowledges funding grants received from the Australian Government.
We thank the individuals, service clubs, philanthropic trusts and businesses that have made donations to HFA. We acknowledge the education and awareness grants and/or conference sponsorship from the following pharmaceutical companies:
CSL BEHRING | NOVO NORDISK | PFIZER AUSTRALIA ROCHE | SANOFI GENZYME | TAKEDA
The HFA Council and Staff wish you a happy and safe festive season.
Thank you for your support during 2025 and we look forward to working with you again in 2026.
The HFA office will close Wednesday 24 December 2025 and will reopen on Monday 12 January 2026.
During that time if you have any urgent queries phone 03 9885 7800 or email hfaust@haemophilia.org.au Messages will be monitored, and we will respond as soon as possible.
NATIONAL HAEMOPHILIA is a publication of Haemophilia Foundation Australia. Every effort is taken to ensure accurate and relevant content, however opinions expressed in NATIONAL HAEMOPHILIA do not necessarily reflect those of the Foundation or the editor, nor is any information intended to take the place of advice from a qualified medical practitioner or health professional.
Haemophilia Foundation Australia does not endorse or assure the products, programs or services featured in NATIONAL HAEMOPHILIA and does not make specific recommendations for any products, programs or services.
We welcome reproduction of articles or quotations from NATIONAL HAEMOPHILIA on the understanding that acknowledgement is made of NATIONAL HAEMOPHILIA as the source.
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