YUHSUAN LIN (YOSHI)
Yuhsuan Lin (Yoshi) is State-wide Haemophilia Nurse Consultant at the Royal Adelaide Hospital, South Australia
I had the privilege of attending the International Society on Thrombosis and Haemostasis (ISTH) 2026 Congress in Paris from 11–15 July 2026. Bringing together more than 10,000 clinicians, researchers and healthcare professionals from around the world, the Congress showcased exciting advances in bleeding disorders research, emerging treatments and evolving models of care.
Several key themes stood out for me that will influence the future of haemophilia care – not only in Australia but worldwide.
One of the strongest messages from this year’s Congress was that people with haemophilia are living longer than ever before. The proportion of people with haemophilia aged over 65 has increased steadily over the past decade, reflecting remarkable advances in treatment and comprehensive care.
While this is a tremendous success, it also presents new challenges. As people age, they are more likely to develop common health conditions such as heart disease, stroke, arthritis and osteoporosis. Managing these alongside a bleeding disorder requires close collaboration between haematologists, general practitioners and other specialists to ensure treatment remains safe and effective throughout life.
The focus of haemophilia care is no longer simply preventing bleeding – it’s supporting healthy ageing and maintaining quality of life.
Perhaps one of the most confronting messages from ISTH 2026 for me was that haemophilia carriers can and do experience significant bleeding.
For many years, women carrying the haemophilia gene alteration were often referred to simply by their genetic status as ‘carriers’, creating the misconception that they do not have bleeding symptoms. Many carriers experience heavy menstrual bleeding, prolonged bleeding following surgery or childbirth, easy bruising and recurrent nosebleeds – even when their clotting factor levels are only mildly reduced or within the lower end of the normal range.
Dr Paula James highlighted that bleeding severity is influenced by much more than factor VIII (8) or factor IX (9) levels alone. Von Willebrand factor levels, blood group (particularly blood group O), genetic factors and, most importantly, an individual’s personal bleeding history all contribute to bleeding risk.
This represents an important shift in thinking. Rather than relying solely on laboratory results, clinicians are increasingly recognising that the patient’s bleeding history should guide assessment and treatment.
The World Federation of Hemophilia estimates that approximately 390,000 women worldwide have factor levels consistent with haemophilia or clinically significant factor deficiency, yet only around 11,000 females have been identified. This enormous gap highlights the need for greater awareness, earlier diagnosis and equitable access to care for women and girls affected by haemophilia.
The message was simple but powerful: haemophilia carriers bleed too, and their symptoms deserve to be recognised, investigated and have equal access to treatments.
Many people living in low- and middle-income countries still do not have access to diagnostic testing or specialised care. Researchers estimated that 64% of inherited bleeding disorders remain undiagnosed worldwide, increasing to 88% in low-income countries.
Improving global access to diagnosis and treatment remains a major priority for the international haemophilia community.
Several next-generation non-factor therapies were presented, including concizumab, Mim8 (Denecimig) and NXT007 (Zemocimig). These medicines are designed to provide effective bleed prevention through simple subcutaneous injections, with dosing intervals ranging from daily to once every four weeks. Early clinical trial results demonstrated substantial reductions in bleeding rates, with many participants experiencing no treated bleeds during the study period.
These advances offer the potential for greater convenience, improved quality of life and increased treatment options for people living with haemophilia in the future.
One of the greatest strengths of ISTH is the opportunity to learn from colleagues across different healthcare systems and cultures.
I was honoured to be a co-moderator with Dr. Laurie Sardo (Hamilton, Canada) to one of the Nurses and Allied Health Scientific Sessions – Improving care in Thrombosis and bleeding disorders: multidisciplinary approaches and patient engagement. Nurses and allied health professionals shared innovative approaches to improving patient care, education and service delivery.
It was also encouraging to see initiatives such as onsite childcare, making international conferences more accessible and supporting greater participation from healthcare professionals with young families.
ISTH 2026 highlighted how rapidly haemophilia care continues to evolve. While innovative therapies are transforming treatment, equal attention is being given to improving diagnosis, supporting healthy ageing, and ensuring women and girls receive the recognition and care they deserve.
I am excited to bring these new insights back to Australia and continuing to work alongside our bleeding disorders community to deliver the best possible care.
The opportunity for nurses to attend the ISTH 2026 Congress came from a number of funding sources, including Pfizer, Novo Nordisk, Sanofi and CSL Behring.
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