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Did you spot something different at the top of the newsletter? HFA has an updated logo and a brand new tagline: ‘For all bleeding disorders’. It’s important for us here at HFA to demonstrate that we represent everyone in the Australian bleeding disorders community.
World Haemophilia Day is literally around the corner. Join in and help raise awareness – put up posters, take the quiz, host a morning tea and take a selfie at one of the many locations lighting up red in support. Watch our socials as well as we share stories and information about living with a bleeding disorder.
Excitement is ramping up for the Australian Bleeding Disorders Conference in October. Make sure you’ve registered, and if you wanted to submit a poster abstract now is the time to do it!
In case you missed it, the March issue of National Haemophilia recently dropped. This issue features a range of articles focused on women and girls, plus the results of our HaemPref survey, conducted in partnership with CaPPRe.
Lastly, we have a reminder to participate in the PROBE Australia study. We are nearly there.
Do you follow us on social media? In March our most popular post asked, ‘I’m a father with haemophilia. When do I get my daughter tested for gene?’. Check it out here.
As always, thanks for being part of our community.
HFA has a new logo!
Here at HFA we felt it was important to demonstrate that we recognise – and represent – people with all bleeding disorders.
While the logo still has the same look and feel as our old one, the new tagline ‘For all bleeding disorders’ is very close to our hearts!
You will see us and our state/territory foundations rolling out the new logo in the coming months.
World Haemophilia Day
World Haemophilia Day is on next week! On 17 April watch as the world turns red in recognition of all bleeding disorders. This year’s theme, ‘Access for all: Women and girls bleed too’ is a worldwide call to action to close the gaps for women and girls with bleeding disorders, who often face delayed diagnoses, limited access to treatment, and a lack of understanding about their unique needs.
Help raise awareness
Help raise awareness for all bleeding disorders. Host a morning tea, place posters at your school or workplace, or simply update your profile picture. Get everyone involved with a quiz, colour-in sheets and a scavenger hunt.
- WHD Posters (A3)
- WHD Colour-in Sheets (A4)
- Bleeding Disorders Quiz (online) | Bleeding disorders Quiz (A4)
- Scavenger Hunt (A4)
- Update profile picture (Canva template)
Lighting up red
Around Australia, landmarks will light up red in support of World Haemophilia Day. Dress in red, head out to a landmark near you and take a selfie. See which locations are lighting up red here – View the list.
National Haemophilia
The latest issue of National Haemophilia is now available in print and online. In this issue we feature women and girls – World Haemophilia Day’s theme of women and girls bleed too, exciting news about the HFA women and girls advisory group, diagnosing a bleeding disorder and understanding your menstrual cycle.
There are stories from young people about living with a rare bleeding disorder. Find out how to exercise to manage your pain. And check out the program for the upcoming Australian Bleeding Disorders Conference!
Australian Bleeding Disorders Conference
Registration is now open for the Australian Bleeding Disorders Conference. Visiting Brisbane from 16-18 October, the Conference is a unique opportunity to connect with individuals, families, healthcare professionals and advocates in the bleeding disorders community.
This conference will cover personal stories, treatment advances, management strategies, and advocacy efforts. Engage in information sessions and networking events tailored to empower and support the community.
Poster abstract submissions
Share your knowledge, experience and outcomes with a national audience. Have your work recognised at the Australian Bleeding Disorders Conference poster display. Submissions close 2 May 2025. Submit your poster abstract.
Haemophilia Treatment Preferences Survey
How do individuals make decisions about treatment? What factors encourage or discourage patients from treatments? What are individuals’ treatment goals?
Last year, we partnered with Community and Patient Preference Research (CaPPRe) to ask people with haemophilia and their parents/carers to share their treatment preferences and goals. Read the results in the latest issue of National Haemophilia.
Being rare
What’s it like to grow up with a very rare bleeding disorder? Some of our community members talk about their experiences and what they have learned along the way.
“It sucks missing out on things. But seriously, take your medication and be careful. It gets better! Research is happening every day. I went from 2-3 needles a week to only 1! You’ve got this!” – Tayla, severe haemophilia
Help us reach our PROBE Study targets
We really appreciate the support our community has been giving to the PROBE Australia Study. This is a very important study for the bleeding disorders community and a big project! We have been recruiting for the last year or so – but we are not quite finished.
We still need
• about 95 people WITHOUT a bleeding disorder – particularly men
• about 50 people with haemophilia – both men and women
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.
