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The new year has well and truly arrived, and what a big year it’s going to be for the Australian bleeding disorders community, with our Conference coming to Brisbane from 16-18 October.
This newsletter we highlight what’s on for 2025, explore the challenges of starting school with a bleeding disorder, highlight an article from National Haemophilia about endoscopies and share Cassie’s story about growing up with type 3 VWD.
Also a reminder to participate in the PROBE Australia study. We still require about 90 responses from people without a bleeding disorder – particularly men (although we would be happy to hear from others as well!).
Do you follow us on social media? One of our most popular posts recently was a carousel featuring some of our amazing HTCs and why they love to keep in touch with you. Check it out here.
As always, thanks for being part of our community. We hope you have an incredible 2025.
What’s on for 2025?
2025 is going to be a big year for the Australian bleeding disorders community. Make sure these dates are in your calendar:
- 28 February – Rare Disease Day
- 17 April – World Haemophilia Day
- 23-25 April – WFH 2025 Comprehensive Care Summit, Dubai
- 1-31 October – Bleeding Disorders Awareness Month
- 16-18 October – Conference, Brisbane
Navigating challenges at school
For young people who have a chronic illness such as a bleeding disorder, navigating the school years can involve significant challenges. Thankfully, supports are available.
Paediatric social worker, walks us through how you can work with your HTC, teachers and school to provide a positive environment for your young person.
Endoscopies – what might I need to know?
Colonoscopies and gastroscopies are common enough medical procedures, however for people with bleeding disorders they may require special precautions to minimise the risk of complications.
Haemophilia clinical nurse specialist, Sue Webzell walks us through what’s involved and how you can plan for the best possible outcome.
PROBE Australia Study
We really appreciate the great support you have given to the PROBE Australia Study. This is a major and very important study for HFA and a big project! We have been recruiting for the last year or so and are still not quite finished.
Currently we are looking for about 90 people WITHOUT a bleeding disorder to complete the survey – particularly men. (Although we would also be happy to hear from more men and women with haemophilia – and females who describe themselves as carriers!)
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.
Growing up with VWD – Cassie’s story
“I had a massive needle phobia. Every time the doctors would try to give me a needle, I would move my arm away. We would be there for up to an hour sometimes waiting for me to keep my arm still. So learning to give myself a needle was a very big thing for me.”
Cassie spoke to HFA about growing up with type 3 von Willebrand disease (VWD), which is a severe form – and her journey to take charge of her treatment. Including overcoming her fear of needles.
WFH Comprehensive Care Summit
The full program (over 40+ hours of sessions!) is now available 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 use HFA’s referral code WFHREF13 at checkout for 5% off.
