ALAN DURSUN
President, Haemophilia Foundation Australia
As we move into 2026, my focus as President is: strengthening unity across our national and local Foundations, preparing our community for the evolving treatment landscape, and ensuring lived experience remains central to every decision we make. Our strength has always come from collaboration between all stakeholders, including foundations and Haemophilia Treatment Centres, and as therapies advance and expectations shift, it is vital that we remain connected, informed and proactive so that every person living with a bleeding disorder in Australia feels supported, represented and empowered.
I hope everyone has had a positive and energising start to 2026. The HFA team has begun the year with strong momentum, focusing on our strategic objectives and priority projects. It has been encouraging to see peer support groups, camps and community events taking place so early in the year. These gatherings are the heart of our movement and a reminder that connection remains one of our greatest strengths.
The Women and Girls Advisory Group met virtually in early February to map out events and education resources aligned with their goals of education, equality and engagement. A priority for 2026 is improving awareness and understanding of diagnosis for women and girls with bleeding disorders.
In February, the fund distributed 11 grants supporting a diverse range of practical and empowering initiatives. These included assistance with a new computer, a gym membership, and vocational training such as heavy rigid truck and forklift licence.
Established in 1994 with the generous support of the late Bryce and Benita Courtenay in memory of their son Damon, the DCMEF has helped individuals build independence, confidence and opportunity for more than three decades and continues to represent an enduring legacy of community support.
The GETs Hub continues to grow as a trusted resource for information on new and emerging therapies. New fact sheets and video content are available, including an interview with Professor Cedric Hermans discussing emerging treatments and a personal story from Steve about his experience with gene therapy. Additional resources will be added over the coming months.
At its November 2025 meeting, the Australian Government Medical Services Advisory Committee recommended funding for Hemgenix® (etranacogene dezaparvovec), a gene therapy for haemophilia B, subject to price negotiation. This is currently progressing through government processes and we remain hopeful that access in Australia will follow.
We continue to update and expand our education materials. A refreshed newly diagnosed haemophilia kit, commonly known as the ‘red folder’, is expected to be available around May. Ensuring information remains accurate, practical and accessible is a key priority.
World Haemophilia Day on 17 April is fast approaching, with many landmarks across the country confirmed to light up red. These moments of visibility are powerful reminders that our community is united worldwide. We encourage everyone to share photos and stories from local events, and further details can be found in this issue.
HFA and the Cambodia Hemophilia Association are pleased to announce a four year Foundation Twinning Partnership supported by the World Federation of Hemophilia. This collaboration will focus on strengthening organisational capacity to better support people with haemophilia, von Willebrand disease and other bleeding disorders. We look forward to learning from one another and building sustainable impact together.
The WFH World Congress, taking place from 19 to 22 April 2026 in Malaysia, is the most comprehensive international bleeding disorders event. Australia will be strongly represented, with nine Australian speakers covering a range of clinical and community topics.
Delegates will include nurses, physiotherapists, psychosocial workers, HFA staff, Council representatives and nine young people, as this is an important way to invest in our next generation. Many attendees have received external funding support. I will be participating in the WFH Youth Leadership Program prior to Congress and attending the WFH General Assembly. Claudio Damiani, HFA Vice President, will represent Australia at the General Assembly as second delegate and attend the Global National Member Organisation training. We look forward to sharing insights and reflections in the June 2026 edition of National Haemophilia.
Sign up for the latest news, events and our free National Haemophilia magazine