YUHSUAN LIN (YOSHI)
Yuhsuan Lin (Yoshi) is Haemophilia Nurse Consultant at the Royal Adelaide Hospital, South Australia
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.
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