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Welcome to the latest newsletter
August has arrived and with it we’re one month closer to the Australian Bleeding Disorders Conference and Bleeding Disorders Awareness Month (BDAM). In this newsletter we share why you should attend the Conference and encourage you to order promotional items for your BDAM events.
In April, Australian health professionals and community delegates attended the WFH Comprehensive Care Summit in Dubai. This event focused on new developments in bleeding disorders and muskuloskeletal issues (MSK). Scroll down for links to their reports.
Curious to see what HFA have been up to over the past financial year? As thanks to everyone who has donated to us in 2024-25, we have prepared a letter detailing what we’ve achieved with their support.
If you have haemophilia or type 1 VWD, be sure to scroll to the end to learn more about opportunities to participate in current research studies.
As always, thanks for being part of our community. I hope you enjoy the newsletter.
Order your promo items for BDAM
Bleeding Disorders Awareness Month (BDAM) is celebrated each year in October. To help you raise awareness, we have a range of promotional items available, including balloons, posters, activity sheets, temporary tattoos, toy cars, jibbitz (croc charms) and more.
If you’re planning a morning tea, informational stand, cupcake sale or school show and tell, the promo items are great for branding and as giveaways.
Promo items are free but quantities are limited – please place your order today to ensure you don’t miss out.
Why attend the Conference?
The Australian Bleeding Disorders Conference is fast approaching. Meeting in Brisbane from 16-18 October, the Conference is the perfect opportunity to meet other community members from around the country with different bleeding disorders.
Why attend?
- Hear from the leaders in treatment, care, and research
- Share personal stories, challenges, and successes
- Discover what’s on the horizon with emerging and new therapies
- Strengthen your connections and build your community
‘We came back from the conference feeling validated, more confident, and connected. We wish that we had been attending previously.’
Have you registered yet? Don’t forget to reach out to your local Foundation and HFA to enquire about community funding – it may assist you with flights, accommodation, and registration costs.
WFH Comprehensive Care Summit 2025
The WFH Comprehensive Care Summit took place on 23-25 April 2025 in Dubai, UAE. The Summit is one of the World Federation of Hemophilia (WFH)’s major meetings and focused on new developments in bleeding disorders and musculoskeletal issues (MSK).
We were fortunate to have a number of Australian health professional and community delegates who attended the Summit and the associated WFH meetings contribute to the latest National Haemophilia:
- HTC Director Dr Liane Khoo writes about health literacy, new VWD therapies and approaches to women and girls
- Haemophilia physiotherapists Alison Morris and Elise Mosey explore new and complex treatment challenges and what can point-of-care ultrasound tell us
- Australian youth delegate, Alan Dursun shares his experience attending the WFH youth leadership training.
Thank you for supporting us
We don’t often talk about HFA as a charity, but we are a not-for-profit, and deeply appreciate the members of our community who support us through regular giving or one-off donations. Your generosity means the world to us, and has enabled us to accomplish so much in 2024-2025.
If you’ve donated to HFA in the past year, you might have received a letter thanking you and detailing everything we’ve achieved with your help. But in case you missed it, thank you.
Together, we’re making sure people living with a bleeding disorder – at all ages and stages of life – get the care and support they need to live active, independent and fulfilling lives.
Research Opportunities
Check the HFA website for more information on consumer research studies about bleeding disorders.
Haemophilia treatment experience interviews
Do you have haemophilia? Or are you a parent of a child with haemophilia? Would you be prepared to share your experiences and decisions about haemophilia treatment?
Hummingbird is seeking Australian adults with haemophilia or parents of children under 18 years for Zoom interviews. Read the study flyer for more information and details on how to express your interest. If you complete the interview, you will be offered a $100 gift voucher for your time.
Hummingbird haemophilia treatment study >
VWD type 1 observational study
VELORA Discover (Hemab) is an international prospective screening study which will observe bleeding and treatments in people with type 1 von Willebrand disease (VWD). The aim is to gather data on a large group of people that can then be compared to treatment outcomes in future clinical trials of new therapies.
This is an important step in researching new therapies in clinical trials.
What is involved?
• Being an adult (18 yrs+) with type 1 VWD
• A screening visit and blood tests to confirm VWD diagnosis
• Regular monitoring and reporting of bleeding events
• Questionnaires on health and daily life.
The study is open to HTC patients at the following hospitals:
• Royal Prince Alfred Hospital, Sydney, NSW
• The Alfred hospital, Melbourne, VIC
• Fiona Stanley Hospital, Perth, WA.
If you are at one of these HTCs and are interested in participating, contact your HTC team.
