ALAN DURSUN
President, Haemophilia Foundation Australia
As we move through 2026, it has been encouraging to see the continued strength, connection and advocacy across our bleeding disorders community. From education and research to youth leadership and international collaboration, there is strong momentum across many important areas, and I thank everyone who continues to support and contribute to our community.
The WFH World Congress brings together the international bleeding disorders community to share knowledge, connect and hear the latest updates in treatment, advocacy and care. This year’s Congress welcomed more than 1,900 participants from 130 countries, including more than 40 Australians and 18 Australian speakers.
I attended the WFH Youth Leadership Program prior to Congress, while Claudio Damiani, HFA Vice President, attended the Global National Member Organisation Training. Both Claudio and I represented Australia at the WFH General Assembly. Reflections from Congress are included throughout this edition of National Haemophilia.
We were also proud to see Professor Albert Farrugia awarded the 2026 WFH International Outstanding Service Award for his contribution to the safety and regulation of blood and blood products, and his work supporting access to safe and effective treatments globally. We congratulate Professor Farrugia on this well-deserved recognition.
Thanks to sponsorship support from CSL and Sanofi, HFA was also able to support nine young people to attend Congress. It was fantastic to see the group build strong connections, engage in sessions and embrace the international experience. Their reflections are also featured in this edition.
April also saw countries across the world come together to support World Haemophilia Day, with this year’s theme being Diagnosis: the first step to care. Across Australia, almost 100 landmarks lit up red in support of the bleeding disorders community. Thank you to everyone who attended events, shared stories and helped raise awareness.
HFA has secured funding to deliver a women’s workshop in July with Dawn Rotellini from the National Bleeding Disorders Foundation (USA) as guest facilitator. Dawn is also the former Chair of the WFH Women and Girls with Inherited Bleeding Disorders Committee,
The workshop aims to support Australian women with bleeding disorders in sharing their personal stories for healthcare self-advocacy, while also strengthening advocacy efforts for women and girls within the bleeding disorders community.
International Women’s Day on 8 March 2026 carried the theme Balance the Scales and highlighted the importance of improving diagnosis, treatment and support for women and girls with bleeding disorders. On World Haemophilia Day, HFA also shared Michelle’s personal story about her journey to diagnosis and the impact it had on her health and wellbeing.
The Haemophilia Foundation Research Fund has granted support to Lara Nicholson and her project exploring psychosocial stressors for families of children with bleeding disorders, along with the development of psychoeducation videos. We look forward to working with Lara and her team on this important project.
From Monday 20 April 2026, Australian Red Cross Lifeblood updated its blood and platelet donation rules by introducing a gender neutral pre donation questionnaire. All donors are now asked the same questions regarding sexual activity, regardless of gender, while all existing testing and eligibility requirements remain unchanged.
Lifeblood has confirmed that these updates are supported by evidence and have been approved by the Therapeutic Goods Administration and endorsed by the National Blood Authority along with state and federal governments. Further information is available on the HFA website – Changes to blood and platelet donation rules.
As always, thank you to everyone across our community who continues to contribute, advocate and support one another. I look forward to continuing this momentum throughout 2026.
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