February 2026 Newsletter

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Happy New Year! 2026 is well and truly underway. This year is already shaping up to be spectacular, with WFH 2026 World Congress visiting Malaysia, and HFA twinning with Cambodia Hemophilia Association (CHA)!

Speaking of Congress, we’re excited to announce that we have confirmed funding for 7 young people (18-30yo) to head to Malaysia for WFH 2026 World Congress! See below for more details and to apply. Congress is always a fantastic event, and being in such close proximity this year we’re expecting Australia to be well-represented.

This newsletter also features the results of a recent research study, Gene Therapy and You, and we share Sophie’s story about being diagnosed with von Willebrand disease (VWD).

Last, we have a new section! Check out all the events coming up for our local community, including camps, breakfasts, awareness days, and more.

As always, thanks for reading.

Youth funding for Congress!

HFA has confirmed funding to support 7 young people (ages 18-30) from around Australia to attend WFH 2026 World Congress in Malaysia from 19-22 April!

Funding includes:

• WFH World Congress Registration (inc. lunch)
• 4 nights bed and breakfast
• Return economy airfares from your capital city

You will need to pay for travel insurance, airport transfers, and a few meals.

Applications are only open to Australian residents and will be assessed on their merit and in some cases, HFA will contact your HTC for confirmation. Applications close 22 February 2026.

Twinning with CHA

HFA and Cambodia Hemophilia Association (CHA) are excited to announce we are entering a Foundation Twinning Partnership!

With the support of WFH, the twinning program will help to build and strengthen the organisational capacities of CHA to support people with haemophilia, von Willebrand disease (VWD) and other bleeding disorders.

Commencing January 2026, the twinning program will run for four years. We look forward to seeing what we can achieve together.

Gene therapy and you

Gene therapies are creating new hope for people with serious conditions like haemophilia. These treatments can be life-changing, but they also raise important questions: how should Australia pay for them, who should have access, and what happens when the long-term effects are still uncertain?

Between June and September 2024, researchers in a study led by the University of Sydney spoke to 87 Australians – including people living with blood disorders, their carers, advocates, and members of the public, to better understand: what influences their decisions, the potential benefits and harms, barriers to access, and what still feels uncertain.

VWD self-advocacy – your voice matters

Sophie wasn’t diagnosed with von Willebrand disease (VWD) until her 20s, after a routine wisdom teeth removal turned into an emergency trip to the ICU.

“I woke up choking on a mouthful of blood, to a theatre full of panicked faces, and someone telling me they were going to have to put me back under as something was not right.”

In this riveting transcript from her Conference presentation, Sophie shares her life growing up (unknowingly) with a bleeding disorder, her journey to diagnosis, and then how that diagnosis helped her to plan the birth of her son.