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Spring is here! Can you believe the Australian Bleeding Disorders Conference and Bleeding Disorders Awareness Month (BDAM) are on next month?! All of us here at HFA are busy getting everything ready, and so excited to share it with all of you.
This week is Women’s Health Week. We’re filling up our socials with information and stories supporting women and girls with bleeding disorders. It’s also Father’s Day on Sunday (just in case you’ve forgotten!) – I’ve included Zev’s story of telling his daughter about haemophilia and carrying the gene change.
Conference planning is well underway, and we’re excited to be able to announce the Youth program. This year we have some great activities planned, including rock climbing at Kangaroo Point Cliffs! Be sure to register so you don’t miss out. It’s all included in the youth (16-30yo) registration.
The HFA office has been steadily filling up with BDAM goodies, from stickers and balloons to jibbitz and cars. If you haven’t already placed your order, head to our website asap – the team is hoping to start packing and shipping next week!
Lastly, scroll to the end for some info about research opportunities. We’ve added a new one – MyABDR education survey. HFA will be developing new education materials for MyABDR users and we would really value your help to determine what is needed.
Thanks for being part of our community. I hope you enjoy the newsletter.
BDAM Promo items shipping next week!
Have you ordered your promo items for Bleeding Disorders Awareness Month (BDAM)? We’ve been busy putting everything together and plan to start packing and shipping next week! If you haven’t put your order in yet, now is the time to do it.
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.
Order yours today and make that morning tea, information stand, cupcake sale or school show and tell really stand out.
What’s on for youth at the Conference?
The Conference youth program is locked in! Challenge yourself with a rock climb out at Kangaroo Point Cliffs. Get to know other youth community members
This year we have some great activities lined up, supported by community members, Alan and Ben. We’ll start out with lunch at the VOCO, then head to Kangaroo Point Cliffs for a climb. Afterwards we will get together for a mix of confidence and community building activities, in between attending the Welcome Reception and Exhibition Opening
The youth program is included in the youth (16-30yo) registration, and covers transport to and from Kangaroo Point.
Register today and ensure you don’t miss out!
Women’s Health Week
Women’s Health Week is underway! From 1-7 September we’re sharing information, personal stories and tips to support women and girls with bleeding disorders.
This year’s theme is ‘Say yes to you’. Together with Jean Hailes for Women’s Health, we’re encouraging women and girls to speak up, check in, and prioritise their health and wellbeing.
MyABDR education survey
Do you record your bleeds and treatments with MyABDR?
What education materials would help you?
What do you think would be useful for someone starting out?
HFA will be developing new education materials for MyABDR users and we would really value your help on what is needed! Complete the MyABDR education survey today. Closing date: 31 October 2025.
Telling daughters: Zev’s story
“Make it a family conversation.”
Zev has severe haemophilia, and realised early on that his daughter would carry his altered gene.
In honour of Father’s Day this Sunday, we’re sharing Zev’s story. He talks about raising three children, two boys and one girl, and how his open, family conversations about haemophilia paved the way for his daughter to understand how she might be affected.
“Normalising haemophilia by making it part of general family conversation helps. Often there’s no obvious signs of haemophilia with current treatments so men with haemophilia might put it on the back burner. But these conversations need to be had. You shouldn’t protect your kids from things that might be necessary.”
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 2 more Australian parents of children under 12 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 >
Haemophilia A translation study
Would you like to help make haemophilia questionnaires clear and easy to understand?
TransPerfect/Connect with Language are looking for Australian adults and adolescents (12-17 yrs) with haemophilia A for MS Teams interviews. Participants will give feedback on how easy the questionnaire language and ideas are to understand. Read the study flyer for more information and how to express your interest. You will receive a $90 payment for your time.
TransPerfect haemophilia A translation 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.
