GAVIN FINKELSTEIN
President, Haemophilia Foundation Australia
Thank you to the community, stakeholders and donors for a wonderful 2024. As we wrap up 2024, we reflect on our achievements.
We started the year with confirmed funding from the Australian Government Department of Health and the National Blood Authority – this was wonderful after a couple of years of uncertainty.
Education resources play a key role in our work and in keeping the community informed. We published five major resources this year and have more in draft format hopefully ready in 2025. On top of this, we launched the new look HFA and state/territory foundation websites.
The WFH 2024 World Congress in Madrid was a wonderful opportunity to meet others, network with national member organisations and hear the latest updates from around the world.
HFA Council held our AGM in October. Keep an eye out for our Annual Report, which will show our work and its impact over the last financial year.
There were also significant birthdays for HFV and HFACT this year – 50 years for HFACT and 70 years for HFV. It was wonderful to see the celebrations that each Foundation hosted and a great opportunity to reflect on the past and how far we have come now.
With new therapies coming to market, including gene therapy, we want to be sure our community members have the information they need to make informed treatment decisions. We have been working on the Gene and Emerging Therapies Hub and conducting a research campaign on haemophilia treatment preferences. The report will be available the beginning of 2025.
We continue to monitor updates about gene therapy in haemophilia and watch the developments overseas. It was disappointing that CSL’s haemophilia B gene therapy product was not recommended by MSAC last month. We are aware that CSL will continue to work with MSAC and we hope for a favorable outcome next year.
You may have been wondering about what HFA is doing about hepatitis C and advocacy after the UK Inquiry findings came out earlier this year. HFA has been reviewing our legal advice to date and exploring our next steps for an advocacy campaign. Over the next few months keep up-to-date on the HFA website and e-news .
The DCMEF was established by Haemophilia Foundation Australia in 1994 with financial support from the late Bryce Courtenay and the late Benita Courtenay in memory of their son, Damon. We called for applications and the fund made 10 distributions. We are funding educational courses, guitar and tennis lessons, gym membership, soft mats and a cubby house.
It was great to see a wonderful turnout of South Australian bleeding disorders community members and families at The Beachouse on Sunday 10 November 2024. It was a good opportunity for parents and children to connect and meet others in the community. We are aiming for an information session in early 2025 – details to come.
Haemophilia Foundation Australia acknowledges the Traditional Owners and Custodians of Country throughout Australia, the land, waters and community where we walk, live, meet and work. We pay our respects to Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples.
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