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March has arrived and the year is well and truly flying. In the last few weeks we’ve recognised Rare Disease Day and International Women’s Day, sharing community stories and highlighting the importance of raising awareness. And in a little over a month we’ll be lighting Australia up red for World Haemophilia Day!
As part of Rare Disease Day, we shared a video of Simoni and Javonte chatting about growing up with a rare bleeding disorder. You can find the link below.
The calendar is also looking very full – if you scroll down you’ll see plenty of events on the horizon, including lunches, playgroups and an axe-throwing activity.
We also have multiple research opportunities you can participate in – including a special ‘Women bleed too’ survey being run by HFA, where we invite women and girls with bleeding disorders, together with those who support them, to share their experience of health care settings.
Last – but not least – we share an interview with ABDR Data Managers, Julia, Marina, Linda and Deidre, who spoke about their role and why the ABDR and MyABDR are so valuable for people with bleeding disorders.
As always, thanks for reading.
Rare Disease Day
On 28 February we recognised Rare Disease Day. More than 5,200 Australians have a bleeding disorder that is considered a rare disease. A disease is rare if it affects less than 1 in 2,000 people. Haemophilia is rare, and some bleeding disorders are very rare; affecting as few as 1 in 1 million people.
In line with this year’s theme, ‘More than you can imagine’, and a focus on equity, we shared stories from our community highlighting how through their own initiative and a few small accommodations, people with bleeding disorders are able to fully participate in school, work, and the outdoor activities they love.
International Women’s Day
International Women’s Day is celebrated each year on 8 March. With the assistance of our Women and Girls Advisory Group (WOMAG), we embraced this year’s theme, ‘Balance the Scales’ to draw attention to the many women and girls in our community with undiagnosed bleeding disorders, and the importance of testing.
It is estimated there are at least 4,380 women and girls in Australia who carry the gene for haemophilia – and of those, at least 1095 have haemophilia – however only 696 females with a haemophilia diagnosis are recorded in the Australian Bleeding Disorders Registry (ABDR) 2024, overall.
Women bleed too survey
HFA are conducting a survey to gather the experiences of Australian women and girls with bleeding disorders when they speak up for themselves in health care settings. We want to know what tools or resources help in these settings, how they could be improved, and what else is needed.
The survey is open until 8 April 2026, and can be completed by women and girls with bleeding disorders/carry the gene, and partners/family members who have accompanied or supported them.
Taking care of your ABDR data
What does an ABDR Data Manager do? Probably more than you realise! ABDR Data Managers Julia, Marina, Linda and Deirdre spoke to HFA about their role with Australian Bleeding Disorders Registry (ABDR) data – and had a lot to say about why the ABDR and MyABDR are an important part of the life of the patient with a bleeding disorder.
“We want to give people the right medication, with the right treatments and the right doses. If a patient records what they are actually doing, it really does make a big difference, especially to the nursing staff who are trying to track all the medication and work out when their next prescription is due and how things are going with the treatment.”
Simoni and Javonte on growing up with a rare bleeding disorder
What’s it like growing up with a rare bleeding disorder? Simoni (type 3 VWD) and Javonte (severe haemophilia A) caught up to chat about growing up, the treatment experience, and why it’s so important for young people with bleeding disorders to share their stories.
“Go do your fun things. Go do your stupid things. Make mistakes. With a little bit of common sense. Have your treatment, go have your fun. Just don’t let it stop you from doing anything.” – Javonte and Simoni.
What’s coming up in 2026
Throughout the year, HFA and our State/Territory Foundations participate in awareness campaigns and host events to bring the community together. See what’s coming up on the calendar below.
HFACT Playgroup – 15/3/2026
Watson, ACT | RSVP to Laura (0406 830 472)
HFQ Men’s Lunch – 1/4/2026
Bronco’s Leagues Club, QLD | Contact HFQ
World Haemophilia Day – 17/4/2026
International Awareness Day | Find out more
HFQ World Haemophilia Day Reception – 17/4/2026
Government House, QLD | Contact HFQ (Bookings closed 6 March)
WFH 2026 World Congress – 19-22/4/2026
Kuala Lumpur, Malaysia | Find out more
HFV Women’s Event – 3/5/2026
TBD, VIC | Save the date
HFQ Mother’s Day High Tea – 9/5/2026
White Horse Ranch, QLD | Contact HFQ
HFACT Playgroup – 17/5/2026
Funland Mitchell, ACT | RSVP to Laura (0406 830 472)
Men’s Health Week – 15-21/6/2026
International Awareness Week | Find out more
HFV Men’s Retreat – 29-31/5/2026
TBD, VIC | Save the date
HFACT Axe-throwing & Teen workshop – 28/6/2026
TBD, ACT | RSVP to Laura (0406 830 472)
World Hepatitis Day – 28/7/2026
International Awareness Day | Find out more
Please note that to attend in-person events you will likely need to be a financial member of your local Foundation. Membership is relatively inexpensive with assistance available for people facing hardship. Please talk to your local Foundation to find out more.
Research Opportunities
Check the HFA website for more information on consumer research studies about bleeding disorders.
VWD symptom study
Principal Investigator: Chad Heatwole, MD, MS-CI
Study details: Researchers at the University of Rochester (New York, USA) are interested in creating a patient-reported outcome measure that will assess the health, symptoms, and disease burden of individuals with von Willebrand disease. This study is being completed by Dr Chad Heatwole from the University of Rochester’s Department of Neurology. This study aims to identify the symptoms that have the greatest impact on quality-of-life for individuals with von Willebrand disease. This will help guide future research involving individuals with von Willebrand disease.
Who can participate:
• Be 18 years old or older
• Be diagnosed with von Willebrand disease
• Reside in the United States, Canada, United Kingdom, European Union, or Australia
• Speak, read, and understand English
What’s involved: The study involves completing demographic questions and completing an online survey asking about the symptoms of von Willebrand disease you experience. The survey will take approximately 10 minutes to complete, and you may skip any questions that you do not wish to answer. All responses will be anonymous and strictly confidential.
How to participate: Interested participants can click the link below to participate:
Haemophilia A prophylaxis lived experience study
Are you on prophylaxis for haemophilia A? Or are you a parent of a child with haemophilia A who is on prophylaxis? Is the prophylaxis with clotting factor replacement therapy? Would you be prepared to share your or your child’s experiences of the treatment journey, daily life, and support needs?
Metis Healthcare Research is seeking Australian adults with haemophilia A or parents of children under 18 years – particularly those who are on prophylaxis with clotting factor replacement therapy – 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 $150 gift voucher for your time.
Click on the link below to find out more.
