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Welcome to the latest newsletter
Have you registered for the Australian Bleeding Disorders Conference? This event is a great opportunity to connect with other people with bleeding disorders from around the country – and to help you get there HFA and state/territory foundations offer funding for community members. Find out more below.
The June issue of National Haemophilia is now available. This issue features World Haemophilia Day, reports from EAHAD and the WFH Comprehensive Care Summit on new therapies and approaches to bleeding disorders and MSK challenges. We highlight Alan’s experience of the WFH Global Youth Leadership training below.
The PROBE Australia Study is reaching the final stretch! We’ve had a great response from people with haemophilia, but now we need 90 responses from men 18 years and over who don’t have a bleeding disorder. Please reach out to your friends and ask them to participate – their experience of life without a bleeding disorder helps us draw a clearer picture of the impact haemophilia has on our community.
Last, but not least, we have some pics of our Aussie doctors and nurses at ISTH (thanks Dr Liane Khoo for sending them to us!).
As always, thanks for being part of our community. I hope you enjoy the newsletter.
We want to help you get to the Conference!
The Australian Bleeding Disorders Conference is only a few short months away and we’re keen to see you there. The Conference is a great opportunity to learn about treatment advancements and hear directly from the experts… It’s also a chance to meet and hear from people living with bleeding disorders, their families and carers, speaking from their experiences and sharing their knowledge.
You’ll have the opportunity to connect with the community in a range of social events, including a meet and greet on Thursday, breakfast and dinner on Friday, plus a fun youth activity.
To help you get there, both HFA and State/Territory Foundations have a pool of funding available specifically for people with bleeding disorders, relatives/partners, or carers. Depending on your circumstances, community funding may be used to offset registration, accommodation, and travel costs.
National Haemophilia – June Issue
The June issue of National Haemophilia is now available to read online and in print.
This issue covers World Haemophilia Day and the upcoming Conference, showcasing the recently released program overview. Yuhsuan (Yoshi) Lin shares her report from EAHAD, and HTC Director Dr Liane Khoo, haemophilia physiotherapists Alison Morris and Elise Mosey and Australian youth delegate Alan Dursun share their reflections on the WFH Comprehensive Care Summit and highlights from the meetings.
Senior social worker, Lara Nicholson describes a Queensland program to help identify women affected by haemophilia, and registered counsellor, Laura Bardell continues her series on menstruation, this time talking about period products and creating a period kit.
PROBE Australia Study
We really appreciate the fantastic support you have given to the PROBE Australia Study. This is a very important study for HFA and a big project! We have been recruiting for more than a year and are still not quite finished.
We still need about 90 men WITHOUT a bleeding disorder to complete the survey.
Is this you or someone you know?
Family, friend, colleague – it can be any male in the community who is 18 years or older. It will only take them around 10 mins to complete the survey.
Why do we want data from people without a bleeding disorder? It’s simple. For the data to be credible, it needs to be able to compare the lives of people WITH haemophilia and WITHOUT a bleeding disorder.
And yes, you are also welcome to complete the survey if you are a male or female affected by haemophilia and haven’t done the survey since 2020!
Please consider sharing the study with your friends, colleagues and extended family.
WFH Youth Leadership Training
It was exciting to hear that Australian Alan Dursun was invited by the World Federation of Hemophilia (WFH) to join their Youth Leadership Program. WFH funded him to attend the Global Youth Leadership Training and the 2025 WFH Comprehensive Care Summit in Dubai.
Alan talked with HFA about his experiences and how the training has inspired him with developing youth activities in Australia. Alan is currently HFNSW Vice-President.
“Youth leadership thrives when it’s supported by the right tools, structure, and mentorship. The training reinforced the importance of creating space for young people to step into leadership roles with purpose and clarity.”
A big note of thanks to everyone who completed the recent Evohealth interviews and University of Sydney survey on haemophilia gene therapy.
The researchers have told us they had a great response and have closed their recruitment.
This is an important way to make your voice heard and we appreciate your support.
Aussies at ISTH
It was great to see our Australian doctors and nurses speaking at the ISTH (International Society on Thrombosis and Haemostasis) conference in Washington.
Pictured clockwise, from top left:
• Dr Jenny Curnow, Westmead Hospital HTC, Sydney, presenting: Advancing care for women in hemostasis and thrombosis: Continuing the legacy of Dr Claire McLintock
• Dr Jane Mason, Royal Brisbane and Women’s Hospital HTC, presenting: Deconstructing the guidelines for the clinician
• Jaime Chase, haemophilia nurse, John Hunter Children’s Hospital HTC, Newcastle, presenting: Educating young people with hemophilia.
Big thanks to Dr Liane Khoo for sending through these photos!
