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November is here and the Christmas decorations are already coming out at all the shops. Our newsletter is a little late this month, but I hope you can forgive us, we’re still catching up after an absolutely enormous October.
The Australian Bleeding Disorders Conference was a huge success – thank you to everyone who joined us in Brisbane. October was also Bleeding Disorders Awareness Month, and as always we were blown away by the support of the community, with people working hard to raise awareness throughout Australia.
October saw us launch a new series of fact sheets on gene and emerging therapies. You may have even seen them at the Conference! You can download or order these (along with all our other print publications) from our website.
Looking to the end of the year – and onto the next – the latest round of funding for the Damon Courtenay Memorial Endowment Fund (DCMEF) and the Haemophilia Foundation Australia Research Fund has commenced. Applications will close in December (Research Fund) and January (DCMEF).
We’re also close to wrapping up the PROBE Australia Study. Thank you everyone who has participated and helped to promote it. For PROBE and other research opportunities, scroll down to the end of the newsletter.
Phew, that was a long intro. Thanks for sticking with me! I hope you enjoy the newsletter.
Conference presentations and posters
Last month saw us all head up to Brisbane for the Australian Bleeding Disorders Conference. With over 230 participants, 77 presentations, 59 speakers, and 15 posters on display, it was huge! We can’t thank our community enough for coming together and sharing their knowledge and experience.
The Conference explored new and emerging therapies, newly diagnosed, getting older, women and girls with bleeding disorders, youth, and so much more.
The presentations and posters are now available to view on our website. A full Conference wrap-up (including session reports) will be included in the December issue of National Haemophilia.
Bleeding Disorders Awareness Month
October was Bleeding Disorders Awareness Month. Around the country there were walks, runs, cupcake stands, morning teas, informational booths, trivia nights, darts competitions, and so much more. We loved seeing HTCs, foundations and community members all come together to show their support.
Note that entries for the Colour-in Competition close this Friday the 14th of November. Don’t miss getting your entries in – there are prizes for each category.
New GETs fact sheets
We have launched a new series of fact sheets on gene and emerging therapies. The fact sheets cover:
- Gene therapy for haemophilia
- Clotting factor replacement therapy
- Bispecific antibody therapy
- Rebalancing therapies
With a number of new therapies becoming available, it’s important to us to keep you informed of your options. The fact sheets are available to download, or you can order print copies from the HFA website.
DCMEF and HFA Research Fund
The Damon Courtenay Memorial Endowment Fund (DCMEF) and Haemophilia Foundation Australia Research Fund are now accepting applications.
The DCMEF provides small grants to individuals or patient support organisations for the care, treatment, education and welfare of people affected by haemophilia or related bleeding disorders. The funding round is currently open and applications close on 16 January 2026.
The HFA Research Fund has $20,000 available for medical, scientific or social research to improve the lives of people with haemophilia, von Willebrand disease or other bleeding disorders and/or those with medically acquired blood borne viruses or other complications. The funding round is for projects to commence in 2026, and applications close on 21 December 2025.
Supporting our children with bleeding disorders in sport
“My name is Nicola. I am William’s mum. William has moderate haemophilia A and is a keen soccer player, competing at an elite level and playing three games of soccer a weekend. This is our story of raising a happy, busy and energetic boy.”
Nicola shares her story of supporting her son, Will, to grow into an active, successful athlete while managing the challenges of haemophilia.
Research Opportunities
Check the HFA website for more information on consumer research studies about bleeding disorders.
Connect With Language study
The Connect With Language research team needs to interview 3 Australian young people with haemophilia aged 12-17 (with a parent present). This Linguistic Validation project is seeking feedback on the wording of a questionnaire about haemophilia. The young people will be reimbursed $100 for their time.
Connect With Language project flyer >
MyABDR Education Survey
Can you help us with education materials for MyABDR?
What do you think would be useful for someone starting out?
What about for someone who records regularly?
HFA is developing new education materials for MyABDR users. Complete the MyABDR education survey (just 10 minutes of your time) and tell us your ideas and feedback!
Closing date extended: 30 November 2025.
PROBE Australia Study – last chance!
The PROBE Australia Study helps HFA collect the evidence for our haemophilia advocacy – new treatments, women, mild haemophilia, and more. It’s a secure anonymous survey that asks about your current health, your joints and mobility and pain. It compares the experience of people with haemophiilia and people without a bleeding disorder.
Thank you if you have already completed the PROBE survey since 2023 – this is the same study, so no need to do it again. But if you haven’t, this is your last opportunity to contribute!
We are wrapping up at the end of November 2025.
Who can take part?
- Adult men and women with haemophilia or who carry the gene
- AND ANY adult men and women without a bleeding disorder (comparison group)
In particular we would like to hear from any men WITHOUT A BLEEDING DISORDER.
Participate in the PROBE Australia Study today! Pass it on to friends and family. If you don’t have a bleeding disorder, the survey only takes about 10 mins.
Final closing date – Sunday 30 November 2025
