The HFA Newsletter is delivered once per month to our email subscribers. Sign-up here.
And just like that, we’ve reached the end of another year. The HFA office will close Monday 23 December 2024 and reopen Monday 6 January 2025. The HFA Council and Staff wish you all the best for the festive season.
If you need to reach us at all throughout the break please email hfaust@haemophilia.org.au or call 03 9885 7800. Messages will be monitored.
This newsletter we feature the December issue of National Haemophilia, share our annual report, Claire tells her story about travelling overseas with haemophilia, and we remind everyone that the PROBE Australia Study is still looking for participants.
November and December are usually a quieter time for our social media, but a ‘Did you know’ post about an experimental treatment for haemophilia currently being tested in beagles caught everyone’s eye. See for yourself.
As always, thanks for being part of our community. See you next year!
Read the December National Haemophilia
The latest issue of National Haemophilia is now available online and in print. In the December issue we thank everyone who participated in Bleeding Disorders Awareness Month in October 2024 and share a gallery of pictures of red events from around Australia.
We also look at why you should stay in contact with your HTC and managing a range of lifetime experiences – travelling with severe haemophilia, growing up with VWD, negotiating the classroom and preparing for endoscopy.
HFA 23/24 Annual Report
Find out what HFA has been up to over the last financial year in our annual report. Illustrated with photos and case studies, this report details our representation and advocacy efforts, how we go about communicating with the community and raising awareness, and our financial reporting for the period.
We also highlight HFA award recipients, and acknowledge all the individuals and organisations who support us in our work.
PROBE Australia Study
It has been a busy year for research studies, and we’re grateful to have such an engaged community, with many people willing to share their thoughts and experiences.
The PROBE Australia study has been running for a while now – it’s a big project! Currently we are looking for about 120 people WITHOUT a bleeding disorder to complete the survey. (Although we would also be happy to hear from more men and women with haemophilia!)
Why do we want data from people without a bleeding disorder? It’s simple. For the data to be meaningful, it needs to be able to compare the lives of people WITH haemophilia and WITHOUT a bleeding disorder.
Please consider sharing the study with your friends and extended family.
Travelling overseas with haemophilia
“We have travelled to France, Bali, Spain, we have cruised around the Mediterranean Sea, we have just been back from Borneo, Malaysia. We won’t let haemophilia stop us.”
Claire is a member of the Australian bleeding disorders community and a mother of two young boys with haemophilia. She shares her experience travelling – from planning and packing to managing issues at the airport – in the latest issue of National Haemophilia.
WFH Comprehensive Care Summit
Registration is now open for the WFH Comprehensive Care Summit. Taking place from 23-25 April in Dubai, this global event, which encompasses the previous biennial International WFH Musculoskeletal (MSK) Congress, is a unique opportunity to explore the latest breakthroughs in bleeding disorders and musculoskeletal care.
For the best rate, register by 31 January 2025 to take advantage of early bird pricing and use HFA’s referral code WFHREF13 at checkout for a further 5% off.
