GAVIN FINKELSTEIN
President, Haemophilia Foundation Australia
It was great to see many landmarks across Australia and the world turn red in support of World Haemophilia Day. You can see some photos in this edition.
After compiling the January 2025 survey, we have looked at the current needs and priorities in our community. We can reassure you that our campaign is progressing and we hope to have more news soon. We are aiming to share results in coming months.
It has been wonderful to see the development of the HFA Council’s Women and Girls Advisory Group. The Group now has a logo and a tagline to convey its priorities – education, equality, engagement.
In 2025 there are already initiatives underway to address key issues, such as World Haemophilia Day and Women’s Health Week campaigns and a plenary and women’s breakfast at the national Conference, along with other activities. With a permanent voice at the HFA Council table, the agenda will remain current and we look forward to reporting more soon.
The Australian Bleeding Disorders Conference is in October this year in Brisbane. The Conference is a not-to-be missed powerhouse, bringing community, health professionals, policy makers and industry together to drive change and improve lives. For the first time we are hosting community meet and greets on Thursday afternoon before the Conference starts.
HFA and the state and territory Foundations have allocated funding to assist people living with a bleeding disorder, relatives/partners or carers to attend the Conference. You can find more information and applications forms on our website.
For young people, there will be an activity on the Thursday before the Conference, led by Alan Dursun who recently attended the WFH Youth Leadership training.
Registrations are now open, and we look forward to seeing you there! www.haemophilia.org.au/conference-2025
You may be aware that gene therapy for haemophilia B is currently being assessed by government to become available for people with haemophilia B. We are aware some people in our community would like to see this as a treatment choice. HFA has made a submission to government as part of this assessment process. We thank all the community members who have contributed to interviews, surveys and provided personal stories to support the submissions.
So much is advancing rapidly in treatment for bleeding disorders and it has been exciting to hear of advances in new therapies for von Willebrand disease (VWD), with a range of clinical trials now becoming available. You can read more about them in Dr Liane Khoo’s report from the World Federation of Hemophilia Comprehensive Care Summit. If you are interested in new VWD therapies, speak to your local Haemophilia Treatment Centre or haematologist about what clinical trials are available.
You may have noticed that you are being invited to participate in quite a few research studies at the moment. One reason for this is that there are several new treatments for bleeding disorders currently going through the process to become available in Australia. As part of this process there are studies underway to understand the impact on people with bleeding disorders and how to improve treatment and care.
In Australia decisions about health services, treatment and care are strongly influenced by research in the area.
HFA will draw your attention to some research studies via e-news and social media as they become available and you can view the studies online in the Participating in research section.
With so much happening and changing very quickly, it’s important to stay up to date with what’s new. You can register for the HFA e-newsletter by signing up to our e-news. This will give you the latest news about bleeding disorders and HFA activities, with updates on events.
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