The September 2026 National Haemophilia is now available to read online and in print. In this issue we feature:
- New Senate BBV Inquiry
- Women’s Stories Matter Workshop
- ISTH 2026 Congress
- Bleeding Disorders Awareness Month
- Exercise as medicine
- Factored In: Lincoln’s guide to raising awareness
Thank you so much to the community members and health professionals who contribute to National Haemophilia. Your insights and expertise are invaluable.
This issue features articles from Alan Dursun, Ashley Fletcher, Yuhsuan Lin (Yoshi) and Veronique Beets, and personal stories from Lenny and Lincoln.
Women and girls with bleeding disorders
On 1-2 July 2026, 18 women met in Melbourne for the HFA Women’s Stories matter Workshop. Co-facilitated by Suzanne O’Callaghan, Leonie Demos and international guest, Dawn Rotellini (NBDF, USA), the workshop aimed to upskill women with bleeding disorders around telling their personal story for their healthcare self-advocacy and to support HFA and local Foundations’ work to advocate for women with bleeding disorders. Shannon, Rebecca and the facilitators reflect on the experience.
How far would you go to raise awareness for women and girls with bleeding disorders? Maia Meier is taking it to the highest mountains on each continent – completing a series of high-altitude expeditions across the Seven Summits as part of Project Elevate Her.
ISTH 2026 Congress & WFH 2026 World Congress
The International Society on Thrombosis and Haemostasis (ISTH) 2026 Congress was held in Paris, France, in July 2026 and brought together clinicians and researchers from around the world to discuss the latest developments in bleeding and clotting disorders.
AHCDO Senior Research Fellow, Ashley Fletcher explores what’s on the horizon for bleeding disorders, and State-wide Haemophilia Nurse Consultant (SA), Yuhsuan Lin (Yoshi) shares her Congress highlights.
At the WFH 2026 World Congress, Australian community member, Lenny, spoke in two separate workshops for the PWBD psychosocial stream. Lenny reflects on the challenges he faced growing up with comorbid vision impairment and haemophilia, and his experience at Congress.
Exercise as medicine
Not so long ago, people with bleeding disorders had significantly shortened life expectancies. Physical exertion was actively discouraged, for fear of triggering bleeds. Thankfully, today things are very different. New Zealand Physiotherapist, Veronique Beets, explains the benefits of exercise for body and mind.
Bleeding Disorders Awareness Month
Bleeding Disorders Awareness Month is only days away. Running throughout October, it’s an opportunity for our community to come together and shine a light on what it’s like to live with a bleeding disorder. In National Haemophilia we share what’s on for the month, why it’s so valuable and how you can get involved.
We also feature Lincoln’s tips on how other kids can help raise awareness about bleeding disorders. Lincoln has been raising awareness with his family and school for most of his life. This October marks Lincoln’s 11th Red Cake Day.
🎈 Promo items for BDAM, including posters, toys, cards and activity sheets, are still available for order (and being packed as I write this) – order yours here.
New Senate BBV Inquiry
As you may have seen in the media and in HFA communications, the Senate has called for an Inquiry into Contaminated blood and blood products.
We welcome this inquiry and our first priority is to address the needs and welfare of our bleeding disorders community. We know how important it is for the circumstances surrounding these experiences to be properly understood and for the voices of our community to be heard.
HFA is preparing a submission to the Inquiry on behalf of the Australian bleeding disorders community. This will be evidence-based, drawing on HFA’s extensive data and the powerful stories of affected people in our community. Learn more about the Inquiry and how to get involved.
Other news
Also in this issue of National Haemophilia, HFA President, Alan Dursun shares his President’s Report, highlighting the strength of our community and what we can achieve when we work together, and farewelling Joanna McCosker and Helen Starosta, both of whom have made an enormous contribution over many years to the bleeding disorders community.
We share quotes from Dr Chris Barnes, Nurse Janine Furmedge and family, Isabelle, Jake and Mack on the 2026 Newly Diagnosed folder, welcome Emiko Hunt to the team at HFA, and reflect on World Hepatitis Day, held 26 July 2026.
We hope you enjoy reading National Haemophilia.
