From the President

GAVIN FINKELSTEIN

President, Haemophilia Foundation Australia

I hope that everyone has had a great start to 2025. It has been great to see many local foundations hosting peer support groups and camps so early in the year. HFA has hit the ground running, with new initiatives as well as World Haemophilia Day and the Conference coming up later this year.

HEPATITIS C

In early January 2025 HFA sent out a hepatitis C survey to community members. This was to understand current needs and priorities – so much has been changing on the hep C landscape. New hep C treatments became available to all Australians in 2016 and most people with bleeding disorders have now been cured. HFA continues to work on hep C and has been following up the recommendations of our 2020 Getting Older report, with a first priority to deal with the urgent clinical recommendations – but what issues remain priorities? We are grateful to affected community members who responded and we will share the survey results in the coming months. After reviewing the survey results, HFA’s hepatitis C sub-committee has had discussions about next steps and these will be presented to HFA Council shortly.

WOMEN AND GIRLS WORKSHOP

HFA Council has established a women and girls advisory group, chaired by HFV’s Leonie Demos, to advise it on the needs of women and girls affected by bleeding disorders and propose a national strategic response. This is an exciting new initiative that will ensure that women’s voice is always at the national table. In February 2025 the group came together in a 2-day workshop to explore key issues and short and longer-term strategies. You can read more in this issue of National Haemophilia.

WORLD HAEMOPHILIA DAY

World Haemophilia Day is next month, with a topical theme of Women & Girls Bleed too. Australia has many locations turning red in support of the day – see our website and socials for locations. We would love you to share a picture of you and your family visiting a landmark on the night.

AUSTRALIAN BLEEDING DISORDERS CONFERENCE

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. Registrations are now open and we look forward to seeing you there.

NEW THERAPIES

In December 2024 we launched the Gene & Emerging Therapies (GETs) hub on the HFA website as a one-stop-shop for up-to-date information about the different new treatments. This will be updated with more information over the coming months – www.haemophilia.org.au/GETS.

We thank everyone who participated in the 2024 HFA HaemPref (haemophilia treatment preferences) survey, that was funded independently through the Haemophilia Foundation Research Fund. The results are in: ‘while the Australian haemophilia community currently prefers subcutaneous injections that are given less often and have a low risk of inhibitors/anti-drug antibodies, its members will consider gene therapy as an alternative, provided concerns they have about its risks and benefits are addressed’. You can read a plain language summary of the results in the pages following this article.